World Edition 2012
Brain Tumour You are not alone on this journey...
ALLIED HEALTHCARE PROFESSIONALS
how they can help you
The astrocytoma survivor who went skydiving Walk Around the World for Brain Tumours... NOW IN ITS 6th YEAR
FREE INSIDE - brain tumour timeline poster
Feature articles on paediatric brain tumours n
Interviews with brain tumour specialists, patients and caregivers around the world n
News of the international brain tumour community
PLUS: Book reviews, directory of brain tumour support groups and more....
Produced by the International Brain Tumour Alliance
GREATER KNOWLEDGE n GREATER COLLABORATION n GREATER HOPE
k l a e W h T d n u Aro
d l r o W n i a r s B r Fo mour Tu
a project of the
Walk Around the World for Brain Tumours! Organise a sponsored walk to raise awareness of and funds for more research and support. Walks can be done anytime between
1 January & 31 December 2012 The IBTA doesn’t want any of your funds raised. These should go to local brain tumour support groups or relevant research institutions. We would like you to symbolically “donate” to the IBTA only the mileage achieved by you on your walk. Walks can also take place during the International Brain Tumour Awareness Week (28 October to 3 November) when groups and individuals around the world will organise scientific meetings, patient conferences, TV interviews, press releases, etc in order to raise awareness about brain tumours. For your organisation or group to be a “supporter” of the “Walk” and “Week” please contact the IBTA Chair or Co-Director as below. The IBTA requires no financial commitment or fee to be paid to us by you. All we are asking for is your enthusiasm in supporting and promoting these events and for allowing us to add your name to our list of supporters.
For more information please visit www.theibta.org or contact firstname.lastname@example.org or email@example.com
Featured Contents WORLD EDITION 2012
Flo. . . . . . . . . . . . . . . . . . . . . . . . . . . . 8
am less optimistic than I was in the 1980s but more optimistic than I was last year an interview with Dr Victor Levin. . . . . . 10 n From
Afghanistan to Activist
her Mum’s shoes, as Katy “walked around the world” for brain tumours
an interview with Katy Aramaki. . . . . . . 50
by Dr Mustafa Khasraw. . . . . . . . . . . . . . 84
HeadSmart Campaign: to speed up diagnosis of brain tumours in children by Professor David Walker. . . . . . . . . . . . 56
by John Coppard. . . . . . . . . . . . . . . . . . . 16
Kurdistan: challenges of treatment, information and support services for brain tumour patients
uneven standard of care for brain tumor patients in Russia: can anything be done? by Dr Mikhail Laskov. . . . . . . . . . . . . . . . 88
burden in relation to a brain tumour diagnosis
in the physiotherapy management of young brain tumour patients
Olympic torchbearers represent the UK brain tumour community with pride . . . . . . . . . . . . 94
by Moira Dennison. . . . . . . . . . . . . . . . . 64
by Dr Martin Klein. . . . . . . . . . . . . . . . . . 58
by Jenna Reid . . . . . . . . . . . . . . . . . . . . . 20
support groups for brain tumour patients
the quality and duration of brain tumor patients’ survival
an interview with Dr Henry Friedman. . . 24
by Dr Stephen A Fletcher . . . . . . . . . . . . 66
we learn from our canine friends?
Supporting Brain Tumor Research (SSBTR): helping to beat brain tumors by funding innovative research. . . . 102 n The
against brain tumors
the EORTC this year celebrating its 50th anniversary is doing for brain tumors
the ASCO brain tumor timeline wallchart. . . . . . . . . . . . . . . . . . 70
neurosurgeon who was inspired by her own mother’s cancer journey an interview with Dr Linda Liau. . . . . . 106 n It
for brain metastases
has been my great privilege to work in the pediatric brain tumor community
by Dr Joseph Megyesi. . . . . . . . . . . . . . . 34
by Professor Christer Lindquist. . . . . . . . . 74
by Patricia Korpik. . . . . . . . . . . . . . . . . . . 110
neuro oncologist Annie Huang talks about her challenging work. . . . . . . . . . . . . . . 38
drug trial from a patient perspective
love what you do, be happy in what you do
by Dr Maryam Fouladi. . . . . . . . . . . . . . 122
by Christine Buckingham . . . . . . . . . . . . 44
by Patty Anthony. . . . . . . . . . . . . . . . . . . 80
by Dr Roger Stupp. . . . . . . . . . . . . . . . . . 28 n Neurosurgery
in physiotherapy for brain tumour patients by Carol Carr . . . . . . . . . . . . . . . . . . . . . . 78
collaboration to accelerate research for diffuse intrinsic pontine gliomas
long-term survivors? . . . . . . . . 126
. . . and many more articles of interest to the international brain tumour community Magazine design by Edwina Kelly, email: firstname.lastname@example.org Brain Tumour
The International Brain Tumour Alliance (IBTA) is grateful for grants from the following companies:*
For further details of the IBTAâ&#x20AC;&#x2122;s sponsorship policy please see www.theibta.org The IBTA welcomes undirected grants in support of its work. Please contact email@example.com or firstname.lastname@example.org *The logos above are for companies that either supported the IBTAâ&#x20AC;&#x2122;s work and projects in calendar year 2011; have pledged or provided support for calendar year 2012; or provided grants during the financial year 2011 - 2012.
LETTER FROM THE EDITORS
Published by International Brain Tumour Alliance Editorial Kathy Oliver, Denis Strangman (Editors) Chris Tse, Sally Payne, Jeanne Pasmantier, Georgie Parker (Editorial Assistants) Art Edwina Kelly (Art Editor & Graphic Designer) Cover photograph Chad Cogburn of Skydive Sussex (USA) Copy With warm thanks to all our contributors, interviewees and colleagues in the international brain tumour community Printing Wyndeham Heron, Maldon, Essex, UK Distribution Worldwide Mailing Solutions Ltd, Lancing, West Sussex, UK Brain Tumour is published by the International Brain Tunour Alliance (IBTA), a not-for-profit, limited liability company incorporated in England and Wales, company registration number 6031485. International Brain Tumour Alliance (IBTA) 10 Carrodus Street, Fraser, ACT 2615 Australia PO Box 244, Tadworth, Surrey, KT20 5WQ, United Kingdom © 2012 International Brain Tumour Alliance (IBTA) DISCLAIMER The International Brain Tumour Alliance (IBTA) has made every effort to be accurate regarding the information contained in this magazine. The IBTA accepts no liability for any inaccuracies or omissions herein nor can it accept liability for any loss or damage resulting from any inaccuracy in this information or third party information. The information contained in this magazine is for educational purposes only. The material in this magazine is in no way intended to replace professional medical care, advice, diagnosis or treatment from a doctor, specialist or healthcare professional. For medical help and advice please consult your doctor. Company sponsorship of the IBTA mentioned in this magazine does not necessarily imply the IBTA’s endorsement of any particular form or forms of therapy, devices, medical regimens, plans or behaviour referred to, promoted, manufactured or distributed by those companies. The views expressed in this magazine are not necessarily those of the International Brain Tumour Alliance. It is not the intention to print any matter that discriminates on the grounds of race, sex, sexuality, belief or disability. The IBTA takes no responsibility for the content of third party websites mentioned in this magazine. With regard to any advertisements in this magazine (the spaces for all of which have been offered by the IBTA to companies and organisations gratis), the IBTA has included these advertisements in the magazine in good faith and on the basis that they have been cleared for acceptable content in a consumer magazine through the relevant company’s and organisation’s appropriate legal channels. The IBTA accepts no liability for or responsibility for the information/content appearing in such advertisements in this magazine. The IBTA welomes the ABPI (Association of British Pharmaceutical Industry) Code of Practice (effective in the UK), the CHF/ MA (Consumer Health Forum/Medicines Australia) Working Together Guide and Manual (effective in Australia), the EFPIA (European Federation of Pharmaceutical Industries and Associations) Code of Practice on Relationships Between the Pharmaceutical Industry and Patients’ Organisations and the Healthcare Industry, and other relevant national and international indusrty-patient guidelines, and endeavours to work within their recommendations. Items in the magazine (except those with original copyright) may be reproduced for the benefit of patients and caregivers as long as appropriate credit is given to the IBTA. Please contact us for information on reproducing articles in this publication. For further information on the IBTA’s sponsorship and transparency policy, please see www.theibta.org VARIATIONS IN SPELLING Spelling in this publication varies according to countryspecific practices and is thus variable throughout the magazine. For example, the word ‘tumor’ is spelled as “tumor’ in the United States but “tumour” in the United Kingdom and Australia. Sometimes the term “neuro oncology” is expressed without a hyphen and at other times with a hyphen as in “neuro-oncology”. To preserve the international nature of this publication, the IBTA has varied the spelling accordingly.
Dear Reader, WELCOME to the third annual edition of Brain Tumour magazine. This year we have printed 12,000 copies which will be distributed free around the globe to recipients in 106 countries. We endeavour to unite the international brain tumour community and in doing so, we try to engender hope and foster camaraderie as we all band together to fight this terrible disease. As one of the less common cancers - and some brain tumours are very rare indeed - we at the IBTA feel strongly that this disease will only be conquered through a unified global effort. One reader summed it all up when he wrote to us and said: “[The IBTA magazine] does bring to life the devastating fact that this is a global war and personalizes how indiscriminate this disease remains. I am hopeful this worldwide effort and sharing will continue to advance the cause.” The IBTA magazine’s global readership is very broad: brain tumour patients, their families and caregivers, clinicians, researchers, neurosurgeons, specialist neuro oncology nurses, allied healthcare professionals, government policy makers, regulators, politicians and others around the world. We hope this latest edition of Brain Tumour magazine reflects the wide variety of people whose lives have been touched by this disease. We are grateful to our funding organisations who have made this publication and its distribution possible. We wish to thank those companies most sincerely. We would also like to thank our many contributors from around the globe and our graphic designer, Edwina Kelly of Edwina Kelly Design, without whose generous help, guidance and talent we could not have produced this edition. Finally, and as always, our foremost thoughts and best wishes are with patients, families and caregivers. We pay tribute to all those who are on this journey, and remember with love and inspiration all those who have been lost along its way. In memory of all these people and for those in the future whose lives will be touched by a brain tumour, we must keep our efforts focused. We must keep our resolve firm. We must keep our hopes high. Every morning we should all ask ourselves: “What can we do for brain tumour patients today?” And every evening we should ask: “Have we done enough?”
Denis Strangman & Kathy Oliver P.S. The articles in this magazine are not inserted in any particular order of
importance. We think they all make excellent reading and if you should start to thumb through this publication from the back, rather than from the front, you will find articles which are as important as those at the beginning. All are excellent in their own way and we hope they provide insight, inspiration and information to our readers. Items in the magazine (except those with original copyright) may be reproduced for the benefit of patients and caregivers as long as appropriate credit is given to the International Brain Tumour Alliance (IBTA). The cut-out posters included in the magazine on the inside front cover and the inside back cover may be freely reproduced. We are also pleased to make available with each copy of our 2012 magazine a special Brain Tumour Timeline wallchart, based on a web version of the ASCO Brain Tumor Timeline. We gratefully acknowledge ASCO’s permission to reproduce their data in this new format. For extra single and bulk copies of this magazine and the Brain Tumour Timeline wallchart, and enquiries about postage and freight costs, please contact: email@example.com or firstname.lastname@example.org
IBTA’s team of dedicated helpers
THE IBTA could not function without the generous support of many people. First, we are grateful to our sponsoring organisations whose logos appear at the front of the magazine and whose contributions enable us to publish and distribute complimentary copies of this magazine to thousands of people around the world in over 106 countries. Then there are the specialists and researchers who answer our queries and let us know what is happening in the brain tumour scientific world. We are also very appreciative of the organisers of brain tumour and cancer-relevant conferences who allow us to exhibit at their events and meet with their delegates. In addition, there are a number of people who are crucial to the day-to-day activities of the IBTA and they include the two full-time, Co-directors, IBTA Chair
Denis Strangman (Australia) and Kathy Oliver (UK). The IBTA’s two Directors, its advisors and its administration team are all unpaid volunteers.
IBTA Co-Director Kathy Oliver (right) with her family, (left to right): daughter Miranda, husband Gordon and son Colin. This photograph was taken in IBTA Chair and Co-Director Denis Strangman
Autumn 2010. Tragically, Colin passed away from his
questions the Australian Health Minister at a
brain tumour in August 2011, age 32, having been
community health forum.
diagnosed in 2004 at age 24.
IBTA advisor Sally Payne, is a university lecturer
IBTA advisor Chris Tse in his Taipei office. Chris
Graphic designer Edwina Kelly masterminded the
in Sydney, Australia. Sadly, Sally lost her sister,
also works from his home city of Wellington, New
artwork and layout for this edition of the IBTA’s
Arianne, to a brain tumour in September 2011.
Zealand. Chris’s wife, Lynda, is a glioblastoma
magazine. Edwina runs Edwina Kelly Design and
Arianne was only 43 years old.
survivor. Chris maintains the IBTA’s online
we are tremendously fortunate to have such an
experienced and talented professional helping us.
Jeanne Pasmantier provides editorial and research
Carol Knight provides administrative support for
Fraser Legge helps the IBTA with its accounting
assistance to the IBTA.
INTERNATIONAL BRAIN TUMOUR ALLIANCE Georgie Parker assists with the ‘Walk Around the
Tara Gent looks after the mileage results from
World for Brain Tumours’ and ‘The International
the individual events that go towards the annual
Brain Tumour Awareness Week’ initiatives.
‘Walk Around the World for Brain Tumours’.
We are also grateful to Jan Payne and Marj Eder for their help with database work. n
About the International Brain Tumour Alliance (IBTA)
THE IBTA logo was the winning design in an international competition to find a suitable symbol for the International Brain Tumour Alliance. The logo symbolises a patient and caregiver-centred approach, strength in purpose, hope, and unity around the globe in the fight against brain tumours. n
Above: Some of the fifty people from eleven countries who attended the inaugural meeting of the IBTA held on 7 May 2005 in Edinburgh, Scotland. They include people with a brain tumour, their carers, scientists, nurses, health professionals, researchers, and former carers.
THE International Brain Tumour Alliance (IBTA) was established during the World Federation of Neuro Oncology conference held at Edinburgh (UK) in May 2005. It seeks to be an alliance of support, advocacy and information groups for brain tumour patients and carers in different countries and includes researchers, scientists, clinicians and allied health professionals working in the area of brain tumours. The IBTA’s two principal activities each year are the “International Brain Tumour Awareness Week” and the “Walk Around the World for Brain Tumours”, which are supported (in a non-financial way) by as many as 197 brain tumour and cancerrelated organisations around the globe. The IBTA produces a regular electronic news bulletin which is distributed to 6,000 contacts internationally and it publishes
a major annual magazine called Brain Tumour. In 2011, 11,000 copies of the magazine were printed and then distributed to recipients for free in 93 countries. This year 12,000 copies of the magazine have been printed and will be distributed to recipients in 106 countries. The IBTA also attends and often exhibits at significant scientific conferences, including the American Society of Clinical Oncology (ASCO), the European Association of NeuroOncology (EANO), the Society of NeuroOncology (SNO), International Symposium on Pediatric Neuro Oncology (ISPNO) and the European Multidisciplinary Cancer Congress, as well as conferences organised by professional societies at which the IBTA usually has a display and distributes its magazine to key participants. The IBTA Co-Directors, Denis Strangman
(Australia) and Kathy Oliver (United Kingdom) are frequent plenary session speakers at major conferences, providing the patient and caregiver perspective on a wide range of issues, including clinical trial design and related explanatory materials, health technology and regulatory issues, and the place of brain tumours within the general cancer community, particularly as a rare or less common cancer. The IBTA also provides the brain tumour patient and caregiver perspective in submissions to regulatory agencies on a wide variety of issues. The IBTA regularly engages in a range of brain tumour and rare/less common cancer-related initiatives on a political level in various geographic regions. The IBTA is a completely voluntary organisation. n Brain Tumour
The astrocytoma survivor who went skydiving
t the time of my diagnosis, my daughter was four years old. I knew I had to do everything in my power to survive for her. Every little girl needs her mommy. Surgery was not an option for me as the tumor was in my motor strip. Any damage to the surrounding healthy tissue would cause paralysis on my left side. A needle biopsy was successfully performed, 8
and I was transferred to another institution for treatment. I received six weeks of standard radiation and ten rounds of chemotherapy (BCNU). All treatments were completed in January 1996. To help my husband and daughter feel like they were part of my healing, I drew a brain with pink marker pen and added the tumor in pencil. Each of us took daily turns running an eraser over the “tumor”.
Eventually, the drawn tumor was barely visible. That was now my goal. When I learned that necrotic tissue was now where the tumor once lived, I knew my life was beginning again. I have had a wonderful life raising my daughter and doing things for myself. I took sign language classes and volunteered at a school for the deaf and hard of hearing for two years.
Photo by: Chad Cogburn of Skydive Sussex (USA)
Florence Marazia, who lives in Lake Hiawatha, New Jersey, USA, was diagnosed with an inoperable anaplastic astrocytoma brain tumor in March 1994. But she hasn’t let her brain tumor stop her living life to the full. In fact, her diagnosis has been the catalyst for a range of exciting adventures. Florence tells the story in her own words.
Above: Flo’s drawing of her brain with the tumor.
Above: On the way up to come down - Flo in the
Above: Flo (right) with her daughter, Nicole (now
Every day her family rubbed out a little bit more of
plane before her skydive
age 22), and her husband, Henry. Flo’s daughter
the tumor with an eraser until it disappeared. “This,”
was only four years old when her mother was
said Flo, “was my goal - no more tumor!”
diagnosed with a brain tumor.
My other accomplishment was skydiving. This is an adventure I had dreamed about for a long time. Now, more than 17 years post diagnosis, I look forward to conquering other things that I may not have considered prior to my diagnosis. On my to-do list for the future are: continuing my sign language education and returning to volunteer in the same
school; volunteering in a local hospital (something I did as a teenager); and learning to speak Italian so I can communicate with my husband’s family when we visit Italy. I’m also very much looking forward to: celebrating my 50th birthday (not for a couple more years) with another skydive; watching Nicole graduate from University in May 2012; helping Nicole
get ready on her wedding day; holding my grandchildren; growing old with my husband, Henry; and increasing my health, strength and balance to be able to run and bicycle ride again. And last, but not least, I want to learn to whistle using my fingers. It sounds silly, but I want to learn how! My eyes have been opened to a whole new world. n
FLO and her husband are helped on their brain tumour journey by the Central New Jersey Brain Tumor Support Group (CNJBTSG). Flo says: “My husband and I found this group while I was undergoing treatments, and have been attending the meetings since. Every brain tumor patient should be as lucky as we are to find such a loving and supportive group. Patty Anthony, Neurosurgical Nurse at JFK Neuroscience Center in New Jersey, and Stan and Virginia Shrodo must be recognized for their devotion to the group and its members. Without them, this support group would not be the success it is. The CNJBTSG is my second family.”
son Matthew was diagnosed with an inoperable grade 3 anaplastic astrocytoma in December 1991. The IBTA featured an article by Stan in the 2011 edition of Brain Tumour and an article about Patty Anthony appears in
this current issue. For more information about the CNJBTSG see http://www.njbt. org/startCNJBTSG.htm] n Below: We are family...members of the Central New Jersey Brain Tumor Support Group.
[Editor’s note: Patty Anthony founded the CNJBTSG in 1991 and Stan and Virginia Shrodo have been involved with the group since 1992, after their
I am less optimistic than I was in the 1980’s, but more optimistic than I was last year. An interview with Dr Victor Levin Neuro-Oncology Physician, Kaiser Permanente, Redwood City, California and Emeritus Professor, Department of Neuro-Oncology, University of Texas MD Anderson Cancer Center, United States
IBTA: Where did you spend your childhood? VL: I grew up in Milwaukee, Wisconsin, a midwestern city north of Chicago, and situated along Lake Michigan. My older sister had TB when I was young, so I was encouraged to entertain myself. My dad was a civil engineer so we had many tools in our basement and garage which I learned to use at an early age to build toys and push carts that I could sit in and steer. IBTA: Did you come from a family environment that had a connection with medicine or research? VL: I had a maternal uncle who was a general practice physician and a paternal uncle who was a neurosurgeon. When I started driving a car, I sometimes stopped at my maternal uncle’s medical office on Saturday and we would go out to lunch together where he would tell me about the patients he saw during the day. At Christmas time, I recall going with him to drop off turkey and other food to patients who had financial hardship. Problem-solving was either in the genes or acquired by my association with my father, a civil engineer. My parents taught that I should help and be kind to others, take responsibility for my actions, and strive to achieve my potential. They also encouraged me to be physically fit and health conscious and to use my abundant energy productively in sports. As a result, I lettered in basketball and track in high school and competed in intramural sports through college. IBTA: What attracted you to medicine and later to the brain tumour area? VL: In high school I contemplated either going into medicine or becoming an 10
Above: Dr Victor Levin and his wife Ellen
electrical engineer. I read many of the important medical biographies of the time and was enamored of the challenges and opportunities to help others (the “knight in shining armor” perception). Once in college, it was clear that my path would be medicine since I enjoyed life sciences and saw unlimited opportunities in medicine and research. In addition, I realized that I would be happiest if I had some employment freedom. I started doing laboratory research as an undergraduate, first in physiological psychology and then in wound healing and experimental animal surgery. Throughout medical school, I did research in the Department of Neurosurgery with David Gilboe, Ph.D. I used to scrub with the neurosurgery staff and their residents, and, during the summer after my third year,
my wife Ellen and I went to The National Hospital for Neurology and Neurosurgery in Queen Square, London where I had a summer neurology clerkship (sponsored by the Cerebral Palsy Society) and Ellen worked in the John N Cumings laboratory. I actually planned to become a neurosurgeon but abruptly changed my mind the last six months of medical school having concluded that I wanted to do research more than I wanted to operate on patients and felt that I could not do both well enough to satisfy my expectations. Since my research was coming along well and I seemed to have an aptitude for it, my mentor, David Gilboe, contacted Vincent Oliverio, PhD, a friend at the National Cancer Institute (NCI) of the NIH in the US. At the time Vince was in the Laboratory of Experimental Therapeutics
‘ of the NCI. He in turn spoke to David Rall, M.D., Ph.D. who offered me a position as Staff Associate following my internship. This break was critical to my future as this is where I learned the skills needed to conduct quantitative pharmacology and pharmacokinetic studies and to develop new techniques needed to study the movement of drugs in the brain, cerebrospinal fluid, and tumors. I realized I enjoyed doing quantitative research to better understand how anticancer drugs worked, how they moved in the brain and CSF compared to other molecules, and how to create experimental cancer therapies to treat brain tumors. Following the NIH, I completed a Neurology Residency at the Massachusetts General Hospital under Raymond D. Adams, fondly referred to as RDA, a mentor who encouraged clear thinking by simplifying neurological disease processes and emphasizing core principles of neuropathological correlation to the clinical situation. Like my parents and prior mentors, RDA allowed me the freedom to attempt anything I thought I could accomplish. So prior to my second year of residency, I applied for and obtained my first grant from the American Cancer Society to conduct independent laboratory research in my second year of residency. During that residency year, I was quite busy because in addition to my laboratory research, I still had to fulfill residency activities that included neuropathology, psychiatry, and neurophysiology rotations. To complete my research, I borrowed lab space and worked nights and weekends. Later that year, I also applied for and obtained a Neurological Research Fellowship from the National Institute of Neurological Disorders and Stroke (NINDS) for my third year of residency. IBTA: How do you relax? Do you play music, go for walks, sail a boat? Do you have a hobby? VL: Over the years I have derived enjoyment from laboratory research, analyzing data from laboratory and clinical research, writing papers, reading and thinking about research, and being with my wife and two children, Lisa and Jason, and friends. I have always been a physically active person and, through
the years, biked, hiked, camped in national parks, swam, played pick-up basketball and tennis, skied, crewed on a three-man racing sailboat, and walked whenever I could. In addition, my wife and I enjoy traveling to different cities and countries. As hobbies go, I do not have an overriding one, but enjoy creating clay, stone, and bronze sculptures and oil painting. IBTA: How do you cope with the emotional and psychological challenges to you personally arising from your work? VL: The coupling of patient care and laboratory research allowed me to believe that I was on the path to creating and developing new therapeutic approaches that would help patients throughout the world. For me, being on this path, even if the goal may not be attainable in my lifetime, has been enough for me to keep going and has given me a sense of peace and purpose on my journey over the past 45 years. After I moved to the University of Texas MD Anderson Cancer Center to be Chair of the Neuro-Oncology Department I realized that we needed to do more to help patients with CNS tumors cope with the impact of their tumor and its treatment on neurocognitive function and quality of life. As a consequence, we developed a multidisciplinary program of patient care in our clinic that brought together neurosurgeons, neuro-oncologist/ neurologists, neuropsychologists, radiation therapists, psychiatrists, physiatrists (a physician who specialises in physical and rehabilitation medicine), nurses, and social workers to provide efficiency and a caring environment for our patients. This effort also led to developing and editing a book, Cancer in the Nervous System, which I found satisfying. A publication such as this was needed by the nascent neuro-oncology field, since it covered the broad and necessary multidisciplinary effort our patients required given that the cure was not around the corner. IBTA: Do you anticipate any significant breakthrough in brain tumor therapies in the next ten years? If so, in what area? VL: Years ago, I thought that the breakthroughs required to develop the drugs needed to treat CNS malignancies were just around the corner of a building,
but that building was round. When my research group started developing Src protein tyrosine kinase inhibitors in the early 1980s I thought the building was finally rectangular and I was optimistic for a decade or so. To date, given the dearth of progress in drug discovery/development for the treatment of CNS cancers, I am less optimistic than I was in the 1980’s, but more optimistic than I was last year. The problem today is that we learn a great deal about the genetics of disease and the control of malignant-invasive tumor phenotypes by modifying DNA and RNA control of tumor cell function, but we spend less time, effort, and money to fully understand the protein interactions that support these phenotypes. Also, since CNS tumors account for about 1% of cancer and have many features different from adenocarcinomas and leukemia, they have not had the full attention of the pharmaceutical industry over the past decades. To me, the goal must be to incentivize scientists and pharmaceutical companies to attempt the steps needed to bring new drugs of value to our patients with CNS malignancies. n
Editor’s Note: “In the early 1990s [in the USA], clinical and research activities in neuro-oncology were concentrated in a few major medical centers, but the growing and diverse scientific needs of the existing and emerging scientific community had expanded beyond the scope of the existing organizations. The need for an organized effort to fill this gap and coordinate the activities in neuro-oncology was recognized in late 1994 by Victor Levin, MD, then Chair of the Department of Neuro-Oncology at the University of Texas MD Anderson Cancer Center (MDACC).” * Dr Levin was the driving force behind SNO’s creation and one of its founders in 1994. He was SNO’s first president (1995-1997). *(SNO, Society for Neuro-Oncology, Celebrating 15 Years, 1995-2010, SNO History Committee: Jan Esenwein, Abhijit Guha, Charles Haynes, Frederick Lang, Victor Levin, Vinay Puduvalli.)
It truly is an exciting time to be in the field of neuro-pathology By Dr Ken Aldape President of the Society for Neuro-Oncology (SNO) and Associate Professor in the Department of Pathology at the University of Texas MD Anderson Cancer Center, United States
spent my childhood in Seattle, Washington where my father was a pathologist. For me, opportunities for biomedical research were the main attractions of a medical career. As far as brain tumors were concerned, I was struck by the fact that relatively little progress had been made on improving outcomes for patients with these tumors. My main research interests are: the role of oncogenes in the behavior of human cancer; primary human brain tumors; molecular genetic aberrations in cancer and molecular marker studies. Research in my laboratory is focused on the characterization of molecular genetic aberrations in human brain tumors. Techniques include genome-wide views of DNA, RNA and protein changes relevant to the clinical behavior of these neoplasms. Tumor tissue is used to identify aberrations and model systems are used to characterize functional consequences of these aberrations. Important developments in the field of neuropathology I believe that the most important recent development in our field of neuropathology has been the accumulation of sophisticated molecular data from brain tumors, through initiatives such as The Cancer Genome Atlas (TCGA). As these data are mined, we will gain a deeper understanding of the molecular underpinnings of brain tumors. One molecular change that we have learned about, mutations in a gene called IDH, has significant implications with respect to our understanding of how glial tumors arise and potentially how they could be treated. But a major disappointment is how
Above: Dr Ken Aldape
slowly we are moving forward with this molecular information with respect to improving outcomes for patients with brain tumors. It is tremendous to have all this data but frustrating when we cannot immediately use this information to help the patients who are afflicted with these tumors. As our field evolves, however, the biggest challenge (and opportunity) will be to incorporate clinically and diagnostically relevant biomarkers into our daily practice. Several biomarkers including 1p/19q loss and IDH mutation, provide important clinical and diagnostic information. But practical challenges exist around the world to allow their incorporation on a routine basis. In addition, new markers will be developed at an ever-increasing rate. Much work needs to be done to clinically validate these markers to ensure appropriate incorporation for patient management. Breakthroughs in brain tumor therapies With regard to significant breakthroughs in
brain tumor therapies in the next ten years, I believe that we will identify subsets of patients whose tumors respond to specific targeted therapies. By matching molecular signatures to patient response we will be able to enrich patient populations to increase the probability of positive outcomes to specific therapeutic regimens. However, we can expect most targeted therapies to be effective in only a subset of patients of a given histologic type. We neuro-pathologists need to be able to cooperate with our clinical colleagues to identify predictive biomarkers to match the right drug to the right patient. Ideally, we would develop these new and clinically useful molecular markers to help classify these tumors more accurately. But currently there is a certain subjectivity with respect to some of our daily neuropathology practices. Advances in the molecular arena could provide objective means to help reduce this subjectivity and provide for more uniform diagnoses. As well, brain tumor patients are often surprised that their tissue samples may yield different results when analysed by different pathologists. While many cases are straightforward, some cases are simply difficult to classify, even among experienced neuro-pathologists. Our standard diagnostic procedures, which include examination of tissue samples under the microscope, in some cases may simply not be sufficient to yield a reliable diagnosis. Simply put, the same slide can be examined by experienced neuropathologists, but the appearance of the tissue may not fit neatly into our existing classification scheme. Despite the challenges it truly is an exciting time to be in the field of neuro-
pathology. The opportunity to work closely with a multi-disciplinary team to engage in clinical trials of targeted agents with molecular correlates provides opportunities to identify predictive biomarkers and hopefully “personalize” therapy by matching the appropriate drug based on the molecular profile of the tumor. The Society for Neuro-Oncology (SNO) With regard to the Society for NeuroOncology, of which I am currently President, one initiative that we are excited about is to join forces with similar societies around the world. For example, with the European Association of NeuroOncology (EANO) we have initiated young investigator travel scholarships to allow SNO members to attend EANO meetings. The leadership of EANO has reciprocated in kind. In addition, we are exploring an opportunity to formalize a World Federation
of Neuro-Oncology (WFNO), inclusive of a number of societies around the world, including ASNO, ISNO, EANO, as well as other groups. Our goal is to facilitate an exchange of ideas, practices and research on an international level. We hope that our efforts to develop WFNO will be inclusive of all relevant societies, including those in developing countries. n
Above: Dr Ken Aldape and family (left to right: Dr. Aldape’s daughter Celina, his wife Herminia Palacio, Dr Aldape and his son Nicolás). Dr Aldape said: “Spending time with my wife and two children is what I like to do for fun, especially hiking, long walks, etc. My main hobby is
“Brain tumor patients are often surprised that their tissue samples may yield different results when analysed by different pathologists. While many cases are straightforward, some cases are simply difficult to classify, even among experienced neuropathologists.”
jogging/running where I try to do a marathon every once in a while.
Patients and families must be given the chance to share their brain tumour journeys with others if they wish IN Western medicine there is a tradition that medical staff at a treatment facility do not go out of their way to introduce patients or families to others who might also be receiving treatment. This arises from respect for a person’s privacy. If patients and families wish to make themselves known to others in a waiting room then that is their business. But many of us are not naturally outgoing and often have difficulty in initiating contact with strangers. In some societies there is also an attitude of stigma and shame about a cancer diagnosis where patients wish to retain strict anonymity about their disease which can be regarded with some suspicion and ignorance in their wider community. How then can we accommodate those who do wish to establish contact with others in a similar situation? There are two primary methods. (1) A cancer treatment centre can
create informal discussion groups to which cancer patients are invited. The groups can be disease-specific, or general groups for all patients. (2) Those responsible for the organisation of educational seminars or conferences for patients, their families and/or caregivers, should include a session where the participants can meet in small groups to discuss their experiences. We acknowledge that brain tumour-specific support groups can be difficult to create and maintain, which is why we commissioned and included several articles on that topic for this issue of Brain Tumour magazine. In short, such groups require persistence, dedicated resources, and the right type of facilitator. The IBTA has noticed that some conferences arranged for patients and families consist mainly of lecture after lecture, with little opportunity for meeting other participants in a relaxed environment. Organisers of this type of conference would do well to read the
message from long-term brain tumour survivor Cheryl Broyles elsewhere in this magazine. Cheryl writes of how she has to prepare for any experience requiring intense concentration and later, needs time to recover from it. At 45 years of age she says her brain is like that of an 80 year old woman. In the absence of an on-going support group at their own treatment centre a sharing group session which has been programmed into a conference can provide patients and their families with the opportunity of establishing ties and exchanging information with others in a similar situation. Brain tumours are a less common cancer and the needs of those who have been thrust into this difficult environment should be accommodated by innovative and lateral thinking. Meeting and talking with others who are also on the same brain tumour journey is a major unmet need for many. n
How did I come to write Navigating Through A Strange Land? As a survivor of a pituitary brain tumor, Tricia Roloff collected stories of experiences and hope from other brain tumor patients, caregivers and family members and compiled them in a book called Navigating Through a Strange Land. Here, Tricia describes the journey that led to the book’s publication.
decided to write my book after several things took place. In 1984 I had transphenoidal surgery to remove a benign prolactinoma (pituitary tumor). The tumor is reached through the nose and then with a small microscopic device is taken out. Luckily, the tumor was encapsulated by calcium so when it was taken out there was nothing left to move somewhere else. I have never had any problems since the surgery and it has been 28 years. Before the surgery was another story, but that is all described in the book. For several years before this I had worked as a typesetter at a German
printing house (I lived in Europe for a year after college) that published five newspapers including military papers. Later I worked as a freelance reporter/writer, along with regular 8-5 jobs. About three years after my surgery, I took a part-time job between 1987 and 1989 at the National Brain Tumor Foundation (now the National Brain Tumor Society). One of my duties was to get patient stories for Search, a newsletter that focused on brain tumor news, research, stories, etc. I also helped update the original Resource Guide. My boss at the then-National Brain Tumor Foundation was Libby Stevenson (I know, blasts from the past for long-timers). During these years I often thought about writing a story about my experiences and other people suggested this also. So around 1993 when my friend Kris who I knew well, suggested we write a book on pituitary tumors, I thought it Left: Tricia Roloff-Perrine, editor of Navigating Through a Strange Land Top: The attractive cover of the third edition of Navigating Through a Strange Land, edited by Tricia Roloff-Perrine
was a great idea. I had known Kris from college but by some twist of fate, she was diagnosed with the same tumor as I, except she had her whole pituitary taken out when she was sixteen because transphenoidal surgery hadn’t yet been perfected. Although I went on to publish the book myself, Kris did write her story for the first edition published in 1994. Her story was pivotal to the book because she was a teenager when she had her surgery and thus was such a long time survivor. Kris had gone through so much that my story paled in comparison. She is so articulate that to this day I feel she could write an entire book by herself. Somewhere around that time Sharon Lamb RN had started a brain tumour support group that met at the University of California San Francisco. I went to this group partly as moral support to Sharon but also as a patient and now editor. I was really into multitasking back then. I drew up a series of questions on paper and handed them out; “I am doing a book and would like anyone who is interested to write their story. Thank you and just send it to my address on the paper.” I waited for the stories to trickle in but
Left: Sharon Lamb, RN, started a brain tumor support group that met at the University of California San Francisco.
by this point, because of all the stories I was hearing in the group, decided that the book needed to be much more diversified than just pituitary tumors - there were so many different situations that needed to be addressed! I got stories in odd ways; the minute I talked to people about the book the more open people became about their situations. I got one story from a publishing forum I attended, another from work, another from a brain tumor conference lecture and then some I reprinted from Search. The professional essays are varied in their themes. I felt it a necessity to include information on neuropsychology and was 53021*Pag Pubblicitaria:Layout 1 2-03-2011 very happy with the essay written. For brain tumor patients to understand how the tumor is affecting them neurologically
is very important; it gives clues to the personality changes that many family members have difficulty with. Faith is a big issue to some people when they travel their journey. So I was delighted that a chaplain who was also a family member of a patient wrote her story. There is much in the book that I, as an editor and former patient, have found so profound. I learned as much from these stories as anyone else. For example, brain tumor patient Melissa Hartman wrote: “It’s true what they say: you have your good days and your bad days. But somewhere in between grows new strength, strength you never thought you’d have.” Ruth Jacobs, another brain tumor patient, said: “Above all, do not give up on yourself or listen to those who have no faith in you or your recovery.” And Karyn Reddick, whose husband had a brain tumour, summed it up by 15:14 Pagina 1 writing: “Life will never be the same for any of us. We learned that real relationships come from a willingness to share our
lives and our vulnerabilities, not just our accomplishments.” When the second edition of the book was published by Fairview Press in 2001 we added more stories and took some of the older ones out. The current third edition is an updated version of the second meaning that the stories are the same, the publisher is now Indigo Press and not Fairview Press and the twenty pages of resources have been thoroughly updated. I strongly believe that reading others’ stories is very cathartic. It leads us through emotions, situations, outcomes, etc. and when we identify with something it validates us, and in that is much of the healing. Validation. A simple thing but so powerful. A psychologist once mused “we all just want to be heard and understood.” That’s the power of the story. n Editor’s note: Tricia’s book, Navigating Through a Strange Land, can be purchased from Indigo Press, www.indigopress.vpweb.com, price $16.95 + $6.00 shipping for US orders; $16.95 + $11.00 for overseas orders.
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From Afghanistan to Activist By John Coppard
t was early summer 2009 and I was on my second “tour” in Kabul, Afghanistan, this time as NATO’s civilian spokesman. I was responsible for representing NATO to media from the Alliance’s 28 member nations - regional powers such as Iran, Russia and Pakistan, and other troop contributing nations to the International Security Assistance Force, as well as Afghanistan’s own emerging media. While my military counterpart handled military-specific issues, I was responsible for explaining the political and diplomatic aspects of NATO’s support to this brave and tragic country. With lukewarm support for the mission in many contributing nations, and a traumatised Afghan population bombarded by Taliban propaganda and wary of Western intentions, the stress of the job could be intense. I felt up to the challenge. But in the spring of 2009 I began to feel periods of light-headedness, bordering on faint, and experienced strange tastes and smells, later identified as small seizures. I first chalked it up to heat exhaustion and maybe stress, something my relatively junior military MD supported. But it wasn’t until two friends confronted me and told me that “something was seriously wrong with me”, that I aggressively sought treatment. I still believe one of them, a young major, may have saved my life by confronting me the night before she left for Canada. I went back to the doctor the day after and was advised that a team of US military neurosurgeons had just arrived from the large US military hospital in Langstuhl, Germany, with a CT scanner. They were at the nearby Baghram Air Base, outside Kabul, in anticipation of an influx of US and Polish combat casualties from a major operation in the east of the country. I was told that if I got in to see them right away, I might be able to get a CT scan. After a high-speed, hair-raising drive in a private Toyota Corolla with my brave
Above: John Coppard, NATO civilian spokesman, live on Al Jazeera (the Arabic language news network) discussing a visit by the NATO Secretary General to Afghanistan in June 2009. The interview took place only weeks before Coppard was diagnosed with a Grade IV Glioblastoma. (Photo courtesy of Al Jazeera, Kabul)
and devoted Afghan interpreter and country advisor (a trained but unemployed radiology technician it turned out), the doctors detected a tumour the size of a pool cue ball in my right temporal lobe. Not to worry they said, it may be benign. Unfortunately, that wasn’t so. Several days later after being medically evacuated to Brussels and operated on, my Belgian neurosurgeon gave me the news. He had successfully removed most of a 5 x 5 x 4 cm brain tumour, but it was malignant: an aggressive Grade IV Glioblastoma Multiforme (GBM). What surprised me was how upbeat he sounded when he gave me the news that I had a 20% chance of surviving five years according to the latest edition of the British medical journal, The Lancet. “What’s so good about that?” I thought, not realizing that had I received the same diagnosis before a
relatively recent treatment combining temozolomide and radiation had been developed, my prognosis would have been measured in months. I underwent the whole six-and-a-half weeks of the combined treatment, then returned to Victoria, British Columbia, on the west coast of Canada, to be with family and friends. I began to stabilize and became more optimistic, particularly given the professionalism of my doctors. The brain tumour experts all seemed to know one another, whether in Canada or in Belgium. It was an encouraging sign. Unfortunately, after about six months my body built up a resistance to temozolomide and my tumour reappeared. Again, however, a recent development in medical science gave me new hope. My oncologists consulted with an esteemed neurosurgeon in Vancouver, a gentleman known personally to my
Belgian neurosurgeon, who put me on a combined treatment of Avastin and etoposide, the latter being a chemotherapy capsule. The combination knocked the cancer back immediately. That was over a year and a half ago and I’ve been doing great since. That’s why when I heard that a highprofile court case was challenging Canada’s laws prohibiting assisted suicide, I felt the need to speak out. The case, should it succeed, proposes something quite radical whereby anyone with a “grievous and irremediable” illness such as cancer, or even diabetes, could be legally “steered”
Above: John Coppard, currently living with a Grade IV Glioblastoma Multiforme (GBM), speaks out against assisted suicide, November 2011, in Vancouver, Canada. He said: “I’m glad that option wasn’t made available to me when I was at my lowest. I’m now on a second cutting-edge treatment and doing great” (Photo courtesy of the Vancouver Sun)
or counseled to take their own life, even by a potential heir, their own medical system, or a nurse, doctor, or caregiver. They would then have ready, legal access to a prescription dose of death-inducing drugs, and assisted in taking their own lives by anyone, even an heir, without a physician or an independent witness present (see the Carter Amended Notice of Civil Claim at www.epcbc.ca). I had experienced periods of great distress during my two-and-a-half year journey with brain cancer and realized how my rights could have been abused had such a system been in place when I was in the early stages of my journey. I believe my country’s anti-assisted suicide laws exist to protect me and people like me from abuse when we are at our lowest and most vulnerable. I have been given a second chance at life due to highly professional medical support from a system dedicated, and legally bound, to treating me. As a retired Navy man with 24 years’ experience in the Canadian Forces, speaking publicly about myself and my periods of vulnerability was not easy, even with my training as a spokesman. But I believe those of us who are living with brain tumours, and have the ability to do so, should speak out on health, legal and political issues that affect us. I believe we owe it to those who no
Above: Commander John Coppard (Retired) in Canadian Naval full dress uniform, 2010. (Photo by Leona Fowler)
longer have a voice due to physiological or psychological reasons to protect their rights as much as we can, and ensure they, and we, have the opportunity to avail themselves of the best treatment possible. I was personally overwhelmed by the positive response I received for speaking out, and remain hopeful that as medical science continues to advance, all of us who live with brain tumours may benefit from systems, societies and laws that protect our rights, serve our interests, and give us the best chance of living long and happy lives. These are things worth fighting for. n
A tribute to Cdr (ret) John George Coppard (29 July 1966 - 5 March 2012) (Sadly, John Coppard passed away soon after submitting his article to Brain Tumour magazine.) I met John Coppard at a conference in Vancouver, while on my way to staff the IBTA display at the 2011 June ASCO conference, writes Denis Strangman. When introducing ourselves around a table he learned of my role with the IBTA and volunteered that he had a brain tumour. Later, I asked if he would write an article about his story for the IBTA’s Brain Tumour magazine and he readily agreed. In an email to me on Saturday 7 January 2012 John wrote: “I write this from the 1910 character home I just purchased in James Bay, Victoria, just a few blocks from the harbour. Lots of rain here but nothing to dampen my spirits.” Two days later when he submitted his
draft for this magazine he wrote: “ P.S. I’m fading fast and didn’t check the proper spelling of the drug names so would appreciate if you have a look-see....” Less than eight weeks later he had passed away. John’s Funeral Mass was held at St Andrew’s Catholic Cathedral, Victoria, British Columbia. His memorial card was headed “Per ardua ad astra” (“Through adversity to the stars”) and included this description: “[John] was a warm and caring person with a wicked sense of humour and gift of the gab. His friends and family remember him for his ability to charm people of all walks of life, his intelligence, wit, kindness, positive spirit and, above all, his zest for life.”
As is the case with so many who are struck by this often devastating disease, people - like John Coppard - who have so much to contribute to the community, are taken too soon from our midst. n
Above: John Coppard (centre, rear) with friends at a conference in Vancouver, Canada, June 2011. IBTA Chair Denis Strangman is seated on John’s right.
IBTA Chair visits South Africa F
rom 22nd to 30th August 2011 the IBTA Chair Denis Strangman visited South Africa at the invitation of Deirdre Kohler who recently established the Brain Tumour Foundation South Africa (BTFSA), which is a patient support, education and advocacy group. The main purpose of the visit was to participate in the 15th National Congress of the South African Society of Clinical & Radiation Oncology (SASCRO) and the South African Society of Medical Oncology (SASMO). The Congress was held in conjunction with the Oncology Nursing Society and the Oncology Social Work Society and other related bodies. Close to 1,000 delegates attended the meeting held at Sun City, located about two hours’ drive from Johannesburg. With the assistance of MSD Oncology the BTFSA had a booth in the exhibition area where Deirdre displayed her book Brutal Honesty and distributed brochures
Above: Some of the audience at the social workers’ session, which was a “full house”.
promoting the BTFSA. Deirdre’s book charts her journey with an oligodendroglioma brain tumour. Denis displayed copies of the 2011 edition of the IBTA magazine Brain Tumour and the monograph, jointly written by him and IBTA Co-Director Kathy Oliver, about the first recorded operation for a glioma which took place in 1884. Many delegates visited the display and took free copies of the IBTA’s publications and bought Deirdre’s book for a donation of 100 ZAR to the Foundation. Visitors to the display booth came from all major
Above: IBTA Chair Denis Strangman with a participant from Madagascar
areas of South Africa and nearby countries such as Botswana, Zimbabwe, Malawi, Madagascar, the Seychelles and Mauritius. Deirdre spoke about her journey at a nurses’ session at the conference and also spoke about her journey and the aims of the Foundation at a social workers’ session. Denis gave two presentations at the social workers’ session as well, on clinical trials and the results of the 2010 IBTA survey on patients’ and caregivers’ attitudes. The presentations were well received. Some 100 visitors to the booth left their contact details for ongoing communications from the BTFSA and the Left: Deirdre Kohler (far left) with some of the conference delegates.
Above: The Brain Tumour Foundation of South Africa (BTFSA) display with IBTA posters promoting the “International Brain Tumour Awareness Week” and the “Walk Around the World for Brain Tumours”.
IBTA. It was obvious that there is a great desire for information. Following the conference Deirdre and Denis met with Professor Barry Kistnasamy and staff at the National Cancer Registry in Johannesburg. There have been problems with the collection of cancer statistics in the past, principally over the question of confidentiality in a country which has an exceptionally high rate of HIV/AIDS. New legislation introduced by the Health Minister on 26th April 2011 requires all doctors and health facilities who confirm cancer cases to report their findings to the National Cancer Registry. From discussions with practitioners and others it is estimated that only 350 to 380 South Africans each year receive the standard of care for their malignant primary brain tumour. South Africa with a population now exceeding 50 million - probably has a hidden and unrecognised group of about 4,000 new patients with a primary malignant brain tumour every year. Clearly, many people are either undiagnosed or cannot afford proper treatment. The 350 to 380 patients who receive the accepted standard of care is only a small fraction. There is an urgent need to work towards a more realistic calculation of the incidence of brain tumours so that this unmet need can be statistically identified. Even so, health officials will probably suggest that the incidence of other
cancers is also grossly underestimated and, in any event, the challenges of coping with HIV/AIDS overshadow everything else. In addition to visiting several pharmaceutical companies in Johannesburg, a meeting to explain the nature of brain tumours and the proposed work of the BTFSA was held with officials of the South African CANSA Society which is the national cancer control organisation. CANSA is similar to the American Cancer Society, the Cancer Council of Australia and Macmillan Cancer Support in the United Kingdom. As mentioned above, the major health issue facing South Africa is HIV/ AIDS, which tends to dominate the health picture. The taxation base from which government services are funded is small. What others might regard as the standard of care for brain tumour patients in developed countries is only available in South Africa via health insurance schemes or by direct private payment. Specialists are few and far between in a country of 50 million people. One key speaker at the SASCRO/ SASMO conference stated that the time for “explicit priority setting has come”. In the scramble for scarce resources it is vital that brain tumour patients do not continue to be undiagnosed and untreated. As a kind of stop gap measure we must ensure that brain tumour patients (possibly the majority) who enter the end of life stage with no proper diagnosis or treatment should have full access to the medications specific to brain tumour care, such as dexamethasone for brain swelling, anti-seizure drugs, and morphine for pain control. This implies that in addition to working for more accurate cancer statistics some form of outreach should be made to the community health services that look after these people at the end of life. In Africa and in similar less developed countries the IBTA is seeking to identify the community groups that provide end of life care for those who have not received adequate treatment for their illness so that brain tumour support groups in the developed countries can assist these groups if they wish. n
Brain Tumour magazine asked Dr Freddy Sitas - who is an expert on cancer in Africa and who, between 1991 and 2002, was the former Head of the South African National Cancer Registry - to comment on the situation in that country outlined in this article. He wrote: “South Africa has achieved a lot to make cancer a registrable condition in 2010, but now it is up to the National Department of Health and the National Health Laboratory Service to develop the appropriate infrastructure to collect, code and interpret the incoming cancer data. “Infrastructure for cancer registries is far more complex (there are over 50 cancer types and over 500 cell types) and requires far more resources than the infrastructure to report on other notifiable diseases, like cholera for example. “Accurate data on cancer by type via the establishment of a few population based cancer registries is an essential long term step, and the responsibility for developing the strategy and funding this adequately is within the remit of those two entities.” Dr Sitas, an Associate Professor and currently Director of the Research Division, Cancer Council New South Wales, Australia also said: “The situation is far worse in places north of South Africa where even simple drugs like morphine are not available. In central Africa, (south of the Sahara and north of southern Africa), there are about 25 radiation therapy units for populations of many millions. [By comparison] there are 23 in New South Wales alone for a population of only 7.25 million.”
Challenges in the physiotherapy management of young brain tumour patients By Jenna Reid Clinical Specialist Physiotherapist, Paediatric Cancer and Haematology Services, Royal Hospital for Sick Children (RHSC), Edinburgh, Scotland
am a Clinical Specialist Physiotherapist working in the field of Paediatric Oncology, with a special interest in central nervous system (CNS) tumours. I was appointed to a newly created post in 2009 at the Edinburgh Royal Hospital for Sick Children in Scotland and am fortunate enough to work alongside an innovative team with such a rewarding patient group. Approximately 155 children are diagnosed with cancer in Scotland per year, 26% of whom have CNS tumours (personal correspondence with the Childhood Cancer Research Group, January 2012). Within Scotland there are two paediatric oncology primary treatment centres, one of them being the Edinburgh Royal Hospital for Sick Children which treats children and young people from all over the east of Scotland. The differing types of CNS tumours, the varying age of patients and the multifaceted treatment regimes all contribute to the challenges involved in the physiotherapy management of this particular patient group. The vast majority of these patients require physiotherapy at some point during their treatment. Often physiotherapy treatment sessions are carried out jointly with other therapists such as the occupational therapist, speech and language therapist, play specialist and therapy assistants. Physiotherapy treatments may include: management of altered tone such as passive movements and splints; stretching and strengthening exercises to maintain joint range of movement and muscle strength; balance and proprioception
Above: Young medulloblastoma patient Jordan Laing carrying out his physiotherapy exercises with Jenna Reid, Clinical Specialist Physiotherapist, Edinburgh, Scotland
exercises (proprioception is the sense of body position and movement in relation to oneâ&#x20AC;&#x2122;s environment); walking re-education and breathing techniques to prevent chest complication. The therapists also provide equipment to promote independent function and mobility. Much of the therapistâ&#x20AC;&#x2122;s role includes educating the patient and their family
in some of the physical side effects of treatment. Such education includes providing advice on the management of fatigue which is caused by the different cancer treatments and following long periods of hospitalisation. In order to support this group of young patients who often have complex therapy needs and come from all over Scotland, part of my role is to liaise with and advise
community therapists. This is vital in order to facilitate a smooth transition from acute care to community rehabilitation. Therefore I have developed a number of clinical guidelines for physiotherapists treating children and young people with cancer. Primarily the guidelines are used by physiotherapy colleagues however, they may be a useful resource for other health care professionals. Most recently I have completed a guideline on the Physiotherapy Management of Paediatric Patients with CNS Tumours. The guideline provides a summary on the most common types of paediatric CNS tumours. It outlines the aetiology and the presentation of CNS tumours including clinical signs and symptoms and gives an overview of medical management such as surgical, chemotherapy and radiotherapy treatments. The guideline describes the main physiotherapy objectives and identifies other factors to consider when treating this patient group, such as the treatment side effects, psychological challenges and the role of family and carers in the patient’s rehabilitation. The guideline is evidence based and promotes a coordinated therapy approach as patients transition from acute to community care. Through regular patient feedback and service evaluation, the physiotherapy service provided to paediatric patients with CNS tumours will continue to develop. The clinical guidelines will be reviewed on a regular basis to ensure the best evidence based treatment is provided to the patients. n For a copy of the clinical guidelines for Physiotherapy Management of Paediatric Patients with CNS Tumours, please contact me at email@example.com
There are at least 120 different types of brain tumour.
Jordan Laing is 13 years old and lives in Fife. He was treated as both an inpatient and outpatient by the Royal Hospital for Sick Children acute physiotherapy team and as a community patient by his local physiotherapist. Jordan’s family and the team involved in his care were provided with an inter-professional Rehabilitation Profile describing his functional abilities and strategies which could be utilised to increase his independence. This profile has been designed by therapists from all over Scotland and is currently being audited to ensure it remains effective for patient/families and colleagues. Here, Jordan describes his experiences of physiotherapy: “I was diagnosed with a medulloblastoma on 7th March 2011 and had to have an operation to remove one of the tumours from the back of my head. After my operation I had to have physiotherapy treatment on the neurology ward. Initially I wasn’t able to get out of my bed due to the number of machines I was hooked up to however the physiotherapist came and did exercises with me to keep my arms and legs strong. I didn’t like the exercises at first as I felt tired and a bit rubbish in myself, but once the physiotherapist explained why it was important, we were able to carry out my exercises together. Once I was up on my feet again I needed to have some balance exercises as I had become quite unsteady and needed some help to walk about safely. Sometimes I did my physiotherapy in the ward playroom but as I felt
better I was able to visit the physio gym which I enjoyed. There was more equipment in the gym and I used the Wii and balancing board which helped my balance. Also by visiting the gym I was able to get off the ward for a while. Then I had to move wards to start my chemotherapy treatment and I had to change my physio. I didn’t like this at first but I got to know my new physio on the cancer ward and it was fine. Once I was discharged from the ward I attended physiotherapy as an outpatient. I enjoyed this as it meant I went down to the gym every day and we worked on my hamstrings as they are tight, and also my balance. I used the MOTOmed (a type of exercise bike), gym balls and various other pieces of equipment. Once I was allowed to go back to my home town I had to see a physio who was nearer to my house. I felt much better by this time so didn’t mind seeing a new physiotherapist who worked in the community. Good points were that I didn’t have to travel far to get to my physiotherapy appointments and the department had good facilities. Bad point was that I didn’t know the community physio and she didn’t know me so it took a bit of time to get used to her. An improvement might be that the community physiotherapist could have visited me at the hospital with my other physio so I knew her and she could see what stage of treatment I was at. I think the physiotherapists work well with doctors and nurses and seemed to always be up to date with my treatment plan.”
The IBTA seeks no financial contribution for a brain tumour organisation to be listed as a supporter for its major projects - we just want you to do something to raise awareness.
Alliance group busy in Japan D
espite the havoc and devastation caused by the March 2011 earthquake and tsunami in their country the Japan Brain Tumor Alliance (JBTA) has been busy during 2011-2012. Mr. Hisato Tagawa, ViceDirector of JBTA, explained that the organisation has a total of 495 registered members across Japan and in the past twelve months it has conducted a series of seminars throughout the country. He said: “We have focused on higher brain dysfunction in brain tumor patients and have invited speakers from the diverse fields of neurosurgery, neuro-oncology, pediatrics, rehabilitation medicine and nursing.” Two seminars were held in Tokyo and another three in Sapporo, Nagoya and Osaka. The distinguished speakers included Dr Hikaru Sasaki, Dr Junichi Fukada, Dr Maiko Matsumoto, Dr Yutaka Sawamura, Dr Yoshihiro, Dr Takashi Kamijo, Dr Naoya Hashimoto, Dr Manabu Kinoshita, and Dr Masahiro Toda. One of the speakers, Dr Sawamura, attended the foundation meeting of the International Brain Tumour Alliance (IBTA) in Edinburgh (UK) in 2005 and met up with the IBTA again at the World Federation of Neuro Oncology conference in Yokohama in 2009. In addition to organising the seminars, Mr Tagawa was invited to the 16th Annual Meeting of the Japanese Congress for Brain Tumor Surgery held on 9th September 2011, in Tokyo, and had the opportunity to present on “Social adaptation and problems with brain tumor patients in Japan”.
Right: Participants at one of the Japan Brain Tumor Alliance’s seminars in Tokyo.
In this lecture, he introduced the practical obstacles and daily life of four post-operative patients with glioma, and discussed their relationship to society as a whole, as well as problems in terminal and palliative medicine in Japan. Furthermore, he again introduced the activity of JBTA in a satellite symposium of the same meeting held on 11th September 2011, in Yokohama. JBTA believes that Japan seems to have less social recognition of brain tumors and less information on these diseases
available for patients and families, as compared with the situation in the United States and other western countries. “To solve these problems and relieve the anxieties and mental problems of patients and families, we have held and will continue to hold similar seminars and lectures, with great help from physicians and medical staff. We hope that our activity toward social enlightenment will provide some positive effects on patients and families suffering from brain tumors,” the JBTA said. n
The 10th Annual Meagan’s Walk ELIZABETH Becker of Meagan’s Walk wrote to us and said: “In 2011 Meagan’s Walk honoured Mother’s Day with the 10th Annual Meagan’s Walk for all ages and abilities. Participants arrived early at Ontario Place and folks were still joining us as we formed the “circle of hope”, the “hug” around SickKids Hospital [Toronto]. I would estimate 3500 participants, possibly as many as 4000 attended. And we all walked 5 km. After the “hug” at SickKids, as usual there was a short closing ceremony. Denise Bebenek, Meagan’s mother,
spoke briefly, but we also had a very special ten year anniversary narrative. For each year of Meagan’s Walk, a story was told, of course, beginning in 2002, with Meagan’s family, who spearheaded the first Meagan’s Walk in honour of their own little Meagan [who passed away from a brain stem glioma in 2001]. The narrator was Cynthia Dale, a well-known Canadian actor, who told the story of Meagan’s Walk with great spirit and tenderness. To date Meagan’s Walk has directed more than CAD $2.4 million to research at SickKids. n
Kristina Knight: on her role at the National Brain Tumor Society…and kayaking IBTA: What is your current position in the brain tumor movement? KK: I have a very exciting role at the National Brain Tumor Society (NBTS) in the United States in strategically directing and overseeing the communications and marketing efforts of the organization. Building awareness and connections, meeting the needs of the community through our programs in research and advocacy, and elevating the understanding and discussion around brain tumors are critical pieces to our work. IBTA: How long have you been doing that or similar work and what led you to become involved in that way? KK: I joined the organization after years of working with technology, biotech, academia, and non-profit clients as part of a marketing communications and branding firm, followed by running in-house marketing communications departments. When the opportunity arose to apply my experience to the world of non-profit I jumped at the chance. Being very peopleoriented, fascinated by research, and ready to make real impact in my work, NBTS was a perfect fit. Since first joining The Brain Tumor Society in 2007, I helped in the merger transition with the National Brain Tumor Foundation (NBTF) in 2008 that resulted in the creation of the National Brain Tumor Society the largest brain tumor non-profit in the US. IBTA: How do you cope with the pressures that develop in this work? KK: Of course the challenge in this work is in balancing the excitement of new advancements and opportunities with the day-to-day reality of this disease. Knowing people are being diagnosed every day, watching people in our community live with the disease, and having to see some of them lose their battle - it’s really hard. It is both the inspiration and the frustration in our work. But ultimately there is a great
Above: Kristina Knight kayaking
deal to be hopeful for and I am grateful to be part of this fight at this place in time. We are truly at a pivotal point in seeing change. In dealing with the stress, as so many of our patients and families know, it’s critical to have support, within the team and within the community. I also rely on laughter. Humor is a wonderful coping mechanism. IBTA: What gives you the most satisfaction from your work? KK: My satisfaction comes in knowing we are really working to drive the field forward in new and exciting ways, which in the end promises to lead to real progress for patients and families. It’s inspiring to be part of a new way of thinking about how to tackle this disease - strategically understanding the big picture and the roles different players play, to then leverage our integrated research, public policy, and advocacy efforts with collaboration to effect real change. IBTA: How do you relax? Do you have a hobby or a sport with which you are involved?
KK: When it comes to decompressing and recharging, I often turn to the outdoors and particularly water. I like to escape to my small place in Maine and kayak whenever possible, especially out and around the islands and bays. I immediately feel my shoulders drop and my breathing change when I’m out there. I also try and nurture some artistic tendencies since my background is in design. Right now it’s mainly through photography. I’m inspired by the light in the morning and late afternoon and the patterns, colors, and textures found in nature. I’m building quite a stock photo library! IBTA: What would be the first three items on your wish list for brain tumor patients? KK: These would be: a. new therapies to make this a manageable disease b. healthcare that meets all the needs of our patients and is accessible to all who need it c. true predictors to be identified so personalized medicine can make an impact much earlier and stop the disease from ever progressing in the first place. n Brain Tumour
Increasing the quality and duration of brain tumor patients’ survival An interview with Dr Henry Friedman Co-Deputy Director, The Preston Robert Tisch Brain Tumor Center, Duke University Medical Center, Durham, North Carolina, United States
IBTA: Where did you spend your childhood? HF: I grew up in New York City. I stayed there until I completed high school.
HF: I take refuge in knowing that even with patients we cannot cure, which is the majority, we are able to offer a meaningful and at times durable quality of life for almost all our patients.
IBTA: Did you come from a family environment that had a connection with medicine or research? HF: No one in my family had ever been a physician or was in research. My father worked in the post office and then later for my grandfather in the garment industry. My mother was a teacher. IBTA: What is your current position in the brain tumor movement? HF: I am currently the Co-Deputy Director of The Preston Robert Tisch Brain Tumor Center at Duke. I do not have an active role in any of the major societies or organizations although I am the reviewer for a number of journals and on the advisory board of several organizations such as the American Brain Tumor Association and Voices Against Brain Cancer. I work closely with the Tug McGraw Foundation which I believe is making a particularly important impact in the field. IBTA: What attracted you to medicine and later to the brain tumor area? HF: Ironically I was attracted to medicine by watching a TV show when I was nine called “Dr. Kildare” which starred Richard Chamberlain. I knew after watching that show that I clearly wanted to become a physician and never changed throughout high school and college. I chose neurooncology for a far different reason. I went to medical school and pediatric residency at Upstate Medical Center in Syracuse, New York. Following this, I started a fellowship in pediatric hematology-oncology at the same institution. During my second year 24
Above: Dr Henry Friedman, Co-Deputy Director of the Preston Robert Tisch Brain Tumor Center at Duke University.
of training, I was working in a hematology lab and decided that I was not interested in hematology but preferred oncology. The head of my program Dr. Frank Oski, was a world famous pediatric hematologist and was not thrilled with my decision. Nevertheless he said if I was going to do anything in oncology I should do neurooncology since no one was doing anything in the field and I might be able to make a unique contribution. I later transferred to Duke Medical Center to complete my fellowship and when asked what I wanted to work on, I arbitrarily, on the basis of Dr. Oski’s prior comments, chose neurooncology. I was sent into the laboratory of Dr. Darell Bigner and never left. He has remained my mentor and one of my best friends to the present time. IBTA: How do you cope with the emotional and psychological challenges to you personally arising from your work?
IBTA: Do you anticipate any significant breakthroughs in brain tumor therapies in the next ten years? If so, in what area? HF: I believe that there will be several breakthroughs over the next decade which will dramatically improve the standard of care for our most challenging tumor, GBM. I am convinced that Avastin is one of the game changers in the field and we already know that it increases progression-free survival in patients with newly diagnosed glioblastoma multiforme, which in and of itself should be an approval endpoint. It may well prove to be effective in increasing survival. Recently completed studies will help answer that question. Some of the newer agents, particularly if found effective in Avastin-resistant tumors, may also prove important. The role of vaccine therapy, especially in patients with minimal residual disease may also provide an impact on this tumor. Of course there are other areas of research which may also prove meaningful. The role of personalized medicine is going to be a challenge since glioblastoma multiforme has so many aberrant pathways that it may be difficult, if not impossible, to provide enough inhibitors of these pathways in the same patient, even if you know which ones to target, to produce a meaningful outcome. This of course remains Holy Grail work and we will learn more about it as future studies proceed. IBTA: What gives you the most satisfaction from your work?
‘ HF: I work in a field where we ultimately lose the majority of our patients. Nevertheless even those that we do not cure have an increase in the quality and duration of their survival. Significantly there is an ever increasing minority of patients with tumors such as GBM who are indeed beating the disease and I do believe that this fraction of patients will increase over the next decade. IBTA: What has been the biggest challenge of your work in the tumor community? HF: The biggest challenge is the fact that so many patients die and the burnout rate among neuro-oncologists is very high, as is true, frankly, in all oncology. Nevertheless if you take satisfaction in helping - albeit not necessarily curing - the majority of your patients, you can sustain a long career doing meaningful work. IBTA: How do you relax? Do you have a hobby? HF: I go to the gym four to five days a
week which helps me both emotionally and physically. I love to road bike and also play racquetball on a regular basis. Finally I watch a modest but consistent amount of TV as a distraction. Sadly, one of my favorite shows of all time - “Chuck” recently ended a five year run. Nevertheless the combination of action, drama, science fiction, comedy and romance in the same show where a computer nerd turns out to be a hero and wins the super CIA agent as his wife is remarkably appealing to me. IBTA: What would be the first three items on your wish list for brain tumor patients? HF: My first three items to wish for are: more effective therapy for the particularly aggressive tumors such as GBM; the ability to continue to increase progression-free survival even if overall survival remains a challenge; and to more completely understand the etiology of these tumors so that ultimately we have far fewer patients that need treatment. n
Angels Among Us Ron Brinton from the Angels Among Us (Duke) walk commented in an email to the IBTA: “We were lifted this year to have so many more survivors leading our walk. We know progress is being made in both quality and length of life. We all strive for a cure.” Over USD $10 million has been donated to The Preston Robert Tisch Brain Tumor Center at Duke University from Angels Among Us since the group’s founding in 1994. For more information, see http://dccc.convio.net/site/ PageServer?pagename=angels_home n
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The SNO trio: Jan, Linda and Megan
ne of the reasons why the scientific conferences of the Society for Neuro Oncology (SNO) run so smoothly is that much of the organisational work has been done beforehand. While the current SNO Chair Dr Kenneth Aldape and the Executive Director Chas Haynes are assisted by many volunteer committees and advisors, a relatively small staff of just three people - Jan Esenwein, Linda Greer and Megan Bell - help to look after the organisational machinery of the Society. Some of the 1400 participants at last year’s Conference would have seen the tall and avuncular Chas Haynes casting an eye over the proceedings, observing and watching, while fielding an occasional query from a participant. Chas is ably assisted at the conferences by Jan Esenwein and Linda Greer, while a relative newcomer, Megan Bell, works as Chas’s administrative coordinator. Working with SNO since the mid-1990s Jan and Linda are usually the first people whom conference participants meet because they staff the busy registration desk. The two women have been doing this for over fifteen years and have come to know the regular participants. Both were present at the birth of the Society in the mid-1990s. Jan recalls: “As assistant director of Strategic Planning for MD Anderson, I had been working with Victor Levin [see earlier article in this magazine] on the strategic plan to develop the Brain Tumor Center as MD Anderson’s first integrated multidisciplinary program. Victor asked me to become a part of the Brain Tumor Center, and if I would be interested in helping put together a multidisciplinary society that would bring together all the specialties focused on brain tumor research and treatment. I sent out 50 letters, and 17 years later, here we are!” Linda adds: “I worked for the MD 26
Anderson Cancer Center in Houston, Texas as the administrative assistant to Victor Levin. As SNO began taking shape in 1995, Jan Esenwein and I were responsible for the administrative portion of the fledgling Society as a side role within the department. When I left MD Anderson in 1997 after the birth of my second child, I took the membership management portion of the Society ‘home’ with me and have continued to work that way ever since.”
Top: Jan Esenwein checks the registration details for Dr Lawrence Cher (Australia) at the 2011 SNO Conference. Middle: SNO staff member Linda Greer checks in a participant for the 2011 SNO conference in Anaheim. Bottom: SNO staff member Megan Bell who said: “I have always been interested in being a part of something that makes a difference and I think SNO does exactly that.”
There is a decidedly Texan flavour to the origins of SNO and its staff. Jan was born and raised in Houston. During the summertime she helped out on her grandparents’ farm, picking cotton and pulling corn (breaking off the ears of corn that had been left on the stalk to dry and were then used for feed for cattle, hogs, chickens and ducks.) She left Texas when she was 20 to work in New York but then
returned to Texas when the New York City default was looming. Another reason why they left New York City was that Jan’s threeyear-old wanted “trees and flowers and chirping birds”. Of her return to Texas, Jan said: “I was hired as an industrial engineering specialist for Memorial Hospital Systems, and helped with the logistics of moving an entire hospital across town, time-and-motion studies, and application of those measures to a zero-based budgeting system. After the birth of my second son, I joined MD Anderson.” On the other hand, Linda was originally from Illinois: “When I was five years old, my family relocated from Chicago to Phoenix, Arizona. I lived there until my 30’s, when I moved to Houston, Texas with my husband.” Neither woman had a family connection with medicine or research but Jan explains: “My dad was an engineer, and two of my brothers are engineers. My third brother started out with a double major: engineering and music, but music won out. So logic and organization are in my genes.” Maintaining the personal touch Linda says she greatly enjoys the ongoing personal interaction she has with SNO members. She added: “I take great pride in being accessible and responsive. One of my goals as the membership manager, especially as we grow, is to maintain the personal touch we had in the early years. In terms of what Jan finds most rewarding in her work, she says: “Definitely the people who devote their professional lives to solving cancer’s mysteries – [they are] brilliant and warm and funny and doing incredibly important work, but amazingly, so appreciative of what I do.” Relative newcomer to the SNO staff Megan Bell grew up in the lower peninsula of Michigan. Megan said: “My family has always been very interested in learning. My father is an engineer and has multiple degrees while my mom is a school teacher. I was one of the kids that always wanted to know about everything. The “why” and the “how” always interested me. “I have always been interested in being a part of something that makes a difference and I think SNO does exactly
that. Prior to working at SNO, I studied engineering in college and worked as a subcontractor for NASA.” Many years’ experience Both Jan and Linda have now had many years experience of working in a ‘virtual’ office. “I believe the success of a ‘virtual’ office largely depends on the work ethic of the people involved and their individual Left: On the day before the 2011 SNO Conference commitment to their position.” said Linda. Linda Greer supervised a team of workers who Jan added: “We each have our own assembled the contents for 1400 bags for area of responsibility, but we send out conference participants. updates when needed and copy in people to keep them informed, mostly by email Megan said: “Even though we are and exchange of documents. Working mostly a decentralized office I probably from home allows me to work late into have one of the more structured the night or on the weekend so that I can schedules; I work typically in an office comfortably take care of big jobs, plus catch usually from 9am to 5pm. If any of us phone calls or answer email at all hours. need to talk to each other, we are an “Linda and I have worked together since email or phone call away. One thing that the first SNO meeting in 1996, so we are I have learned is a charged cellular phone tuned in to what the other is doing and is extremely important!” how we can help each other. If we get in Linda relaxes “ ...with a great glass a bind, we know that we can ask for help of wine in the evenings with my family, Astro Page and getFund it.” BrainTumourMag ad_Layout 1 08/03/2012 especially10:36 outside by 1our pool.”
Megan enjoys “watching goofy movies, spending time with friends, and cooking for others. In my spare time, I like to explore the city and the area near where I live. Recently, I have tried to reconnect with the activities that I liked as a kid such as bowling and skeetball.” Jan exercises her logic and organisation genes for relaxation. So the next time you are standing at the SNO registration desk and Jan is asking how you spell your family name, consider this answer that she offered to Brain Tumour magazine: “I am a genealogy junkie. Most of the research I do is online, and some folks think that I am a little nuts because I love bouncing from census to death certificate searches and back again as I build (and document) family relationships. “My database maps my relationship to over 4600 people in almost 1600 families. I have my dad’s side of the family documented back to 1740, and I have visited some of the homes my ancestors lived in. Now I am working on taking my mom’s side of the family back as far as records allow.” n
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What the EORTC - this year celebrating its 50th anniversary - is doing for brain tumors By Dr Roger Stupp President-elect of the European Organisation for Research and Treatment of Cancer (EORTC) with a systematic and interdisciplinary effort focusing on novel therapies, combination of modalities, and treatment based on better biological understanding of the disease. With brain tumors being a rare disease entity, only the EORTC could offer the needed translational platform and expertise for conducting clinical trials. Over the years, the EORTC Brain Tumor and Radiation Oncology Groups have substantially benefited our patients.
Above: Dr Roger Stupp
his year marks the 50th anniversary of the European Organisation for Research and Treatment of Cancer (founded in 1962). It is among the oldest clinical cancer research organizations, and was the first group to coordinate cancer research throughout numerous European countries. EORTC and its investigators have contributed to major advances in all fields of cancer medicine. The EORTC Brain Tumor Group The Brain Tumor Group within the EORTC was founded in the 1970â&#x20AC;&#x2122;s when several leading and visionary neurosurgeons and neurologists joined forces in order to systematically investigate new treatments for patients suffering from malignant brain tumors. They realized early on that progress and better outcomes can only be achieved 28
EORTC brain tumor trials Numerous early phase II, randomized controlled phase II and phase III trials were conducted. In particular the controlled clinical trials allowed for a change in clinical practice and have influenced the current standard of care. In low-grade glioma, EORTC trials (as well as a similar trial by the Radiation Therapy Oncology Group in the USA) demonstrated that a lower (and thus less toxic) radiotherapy dose may suffice, and that many patients may not need immediate radiotherapy. In patients who are mainly asymptomatic regular imaging and close clinical observation may be more advisable. The value of adjuvant chemotherapy was investigated in anaplastic oligoastrocytoma and oligodendroglioma. While no benefit could be shown when treatment is given to all patients, a much better prognosis could be demonstrated for pure oligodendroglioma, thus allowing specific refinements of subsequent treatments. And then of course there was the trial in collaboration with the National Cancer Institute of Canada Clinical Trials Group (NCIC) that established improved outcome with the combined and concomitant treatment of temozolomide chemotherapy and radiation for patients diagnosed with glioblastoma. Importantly, all recent trials have also
included molecular analyses. Molecular markers will allow optimizing and tailoring treatment, and identifying new treatment targets. MGMT is now an established marker, although we also learned that the best technique for determination requires some more effort. This experience underlines the importance of validation of biomarkers and results. The importance of international collaboration Tailoring therapy based on individual tumor characteristics aims at specifically inhibiting targets that are the main drivers for tumor development, and will allow for more effective therapy with less side effects. In order to make such progress, international collaboration becomes even more important, not only by exchange of knowledge, but as a proactive collaborative investigation. Tumor samples will need to be sent to specialized laboratories. Only as a group can we analyze enough tumor samples in order to detect rare mutations and investigate specific and novel treatment strategies. Despite economic globalization, clinical research faces numerous obstacles when cross-boundary exchange of tissue and concerted research is needed. National regulations and increasingly institutional bureaucracy limit our ability to conduct research. This prohibits access for patients to the latest research and treatment. These regulatory and organizational challenges have changed the face of the EORTC over the years. The staff has grown to a medium-sized enterprise of over 150 collaborators, and a network of 200-300 actively participating institutions and thousands of investigators, local study nurses and research associates. Brain tumor investigation within the
EORTC is conducted as a joint effort by the Brain Tumor and the Radiation Oncology Groups, with approximately 100 actively contributing institutions. Strategies are commonly defined within international collaboration jointly with collaborative groups and institutions in the USA, Canada, Asia and Australia. Key for the design of these complex clinical and translational protocols, and for their successful conduct and coordination, is the skill of professional teams at the headquarters in Brussels providing methodological input, statistical expertise and operational support. Rapid and efficient investigation is key The administrative demands on investigators have increased in recent years to a point that some have to renounce participation in clinical trials. Not only can the local and national requirements be hardly met, these regulations initially aimed at patient protection now negatively impact on daily practice, time available for patient care
and access to novel treatments. The increasing regulatory obstacles and administrative burden absorb substantial resources without a tangible return of investment and a questionable enhancement of patient safety (the initial proclaimed goal of increased regulatory bureaucracy). Hundreds (and more likely thousands) of hours of thinking, preclinical research, discussion, preparation, and peer-review go into the development of a clinical research protocol. A protocol takes into consideration all available knowledge, and reflects the most promising avenues forward in order to prove (and also disprove) that a new treatment strategy is superior to the previous therapy. Rapid and efficient investigation is key to progress, as is to demonstrate early on that a new treatment is not as effective as, or superior to, another treatment. The challenges are multiple as the EORTC moves into its next 50 years of life. And I have the privilege to lead this great organization for the next three years. n
Where thereâ&#x20AC;&#x2122;s a Will thereâ&#x20AC;&#x2122;s a way!
Will Abbott, founder of the Philippine Brain Tumor Alliance, distributes IBTA magazines to medical staff in his home country. n
ASSOCIATION of NEUROONCOLOGY
PARC CHANOT Convention & Exhibition Centre FRANCE
Early deadline June 15, 2012
EANO12_Ad_Brain_Tumour_124x175 19.03.12 08:10 Seite 1
Our work place is the world and ours is an international mission An interview with Dr Ali Choucair Neuro-Oncologist, Norton Neuroscience Institute/Norton Cancer Center, Louisville, Kentucky, United States
IBTA: Where did you spend your childhood? AC: I was born and raised in Beirut, Lebanon. IBTA: Did you come from a family environment that had a connection with medicine or research? AC: My siblings and I are the first generation in both of my ancestral lines to go to school. My younger brother is also a physician. My parents did not know how to read or write. Their parents were farmers in a village that lies on the IsraeliLebanese border. My paternal grandfather was a country doctor who died when my father was a teenager. He was gifted in using herbs gathered from the hills of his native village to heal the people of his and the neighboring villages. Grandpa believed God gave him the gift to heal and that if he were to accept payment for his service that God would take the gift away from him. He was also a farmer, and he always had his horse with him in the fields, ready to leave his crops and take care of the sick at a moment’s notice. As a result, and despite his hard work, his crops were not always the best because, according to my grandmother “he was a fool” who would let his crops suffer while he took care of the sick. I decided many years ago that I wanted my life as a physician to honor the legacy of my grandfather the country doctor. I am a sentimental person and I deeply believe there is a continuity and a connectivity between us and our dead ancestors. IBTA: What attracted you to medicine and later to the brain tumour area? AC: I always wanted to be a doctor. My teachers and my father always told me: “Do not waste your mathematical brain on medicine, be an engineer.” 30
Above: Dr Ali Choucair and his daughter in Paris
From a young age I was fascinated by the brain. My interest intensified during my undergraduate studies at Rice University, where I spent time reading about brain research and was mentored by George Schroepfer, MD, Ph.D. I decided to be a brain researcher and was awarded a National Science Foundation (NSF) stipend for undergraduate research. I actually entered medical school with the intention of being a researcher like George. It wasn’t until my first year of clinical exposure at the University of Calgary Medical School in Canada that I started to think more about clinical medicine. I stopped attending lectures in my second year of medical school and started spending an inordinate amount of time on the wards interacting with patients. That was pre-HIPPA (Health Information Privacy Protection Act). Then, during my first year of internal medicine residency, I realized that I was drawn to the oncology patients. It pained me to see so many of them suffering with intractable cancer-related pain as inpatients. I started to wonder how much more they would be suffering as outpatients.
It was thus very early in my medical education that I decided, to the dismay of my faculty advisor, to become a neurooncologist. My faculty advisor told me: “Can’t you find two less depressing fields to combine than neurology and oncology?” I went on to do residency in neurology and then on to the University of California at San Francisco (UCSF) to do my fellowship in neuro-oncology under Drs. Victor Levin and Charles Wilson. Dr. Wilson had an incredible influence upon me as a fellow. He awoke and nurtured within me tremendous intellectual curiosity. Of all the professionals who have influenced my life Dr. Wilson was my premier mentor. IBTA: How do you relax? AC: My life is a combination of “overalls” and hard work. I relax by reading good books and by listening to classical music. I love being out in nature. I block about an hour every day for “thinking”. I consider Utah my home because its majestic mountains remind me of my beloved homeland of Lebanon. I admire the combination of these majestic mountains with waterfalls making their way down the slopes, nurturing life as they go. Before I busted my knee and my back and gained almost 70 lbs I was a long distance runner. I would run 15 miles a day, six days a week in an open space where I could carry on a conversation with nature while seeking inspiration into the challenging problems of some of my patients. I would then come home and write down the thoughts that would come into my mind and study them during and after taking a shower. Today I take many long walks and do the same thing. I also spend a good amount of my time following global politics.
‘ IBTA: How do you cope with the emotional and psychological challenges to you personally arising from your work? AC: I have learned that every struggle comes with a hidden blessing, a discovery of one’s hidden abilities. I was raised in a poor home but my parents never made us feel poor. I have been getting up before five o’clock in the morning since my childhood years. The first time I sat at a table to eat or a desk to study at home was in grade 13 when I was 18 years old. The first time I slept in a bed was in grade 13. Until then we slept on the floor, we ate on the floor, and we studied on the floor. I have developed the perspective that until it is time to go into the grave, challenges are meant to propel us upwards. This perspective was not part of my medical school curriculum but was part of my home education. As an 11-year old I had an experience that has been a tremendous compass in my life. I was the only one on the soccer team without soccer shoes. I worked very hard doing errands and chores in the neighborhood to save for soccer shoes. My parents had limited means. My father, who my grandma would say “ was a fool like his father” would give me rolled pieces of paper and ask me to leave them under the door of one of our neighbors. After doing this several times I became curious and unrolled the piece of paper. When I saw money inside it I became very angry and raced home telling my father he loved the neighbors more than he loved me. After I calmed down from my frenzy he took me into his arms and, squeezing me to his warm chest, said: “Not everything that God gives us is ours to keep. We must give something back. It is more important for our neighbors to have food on the table than for you to have soccer shoes.” For years after that I played soccer barefoot. Life is made better or worse by our perspective. There is always someone who has it much worse than I do. Because of the culture of my boyhood and my youth I am a strong believer in the healing power of touch. I am not ashamed to hold my patients when they are crying. I am not embarrassed giving them bad news because they know I will always be
there for them. I never stand up or reach for the door until I am sure my patients’ needs have been met. IBTA: What is one of the highlights of your professional career? AC: As a fellow at UCSF I came to the realization that our outcomes, without addressing the issues of quality of life and neurocognitive function, were inadequately reflective of the effectiveness of our treatment efforts. Getting involved in and advocating for that aspect of clinical care and research has been a satisfactory highlight of my professional career. I was quite pleased recently when the National Cancer Institute (NCI) approved our proposed RTOG 0925 study for patients with low risk low grade glioma with neurocognitive function as the primary objective with QOL and molecular correlates for neurocognitive function as two of the secondary endpoints. IBTA: What is your vision? AC: I look back on my professional years
so far with great appreciation for the life I have had, for my four accomplished and special children, for my Lebanese inheritance and for my many professional friends. I have been given much more than I have deserved. The holy books speak of God’s grace (where He gives us what we have earned plus a generous bonus). To me His grace has been made manifest in my life by the grace of family, friends, and especially my patients who have given me much more than I deserve. I lead a life of ongoing indebtedness. I feel I can never do enough good nor give enough to good causes. I was born and raised in very humble circumstances. I have a wonderful professional career, have travelled the world over, and as our dear and beloved colleague and friend Dr Ab Guha, a renowned Canadian neurosurgeon, used to say: “We are all friends”. This is the vision we all need to harvest as physicians - that our work place is the world and ours is an international mission. n
Professor Martin van den Bent speaks to Australian audience
Above: Professor Martin van den Bent addressing brain tumour patients and carers at a Forum in Sydney organised by Brain Tumour Alliance Australia (BTAA) and the Sydney Neuro Oncology Group (SNOG). Pictured to Prof van den Bent’s left is Dr Helen Wheeler, a Director of SNOG.
ON a visit to Australia in March 2012, Professor Martin van den Bent (Netherlands) was invited to speak to an audience of 145 brain tumour patients and carers at a Forum organised by Brain
Tumour Alliance Australia (BTAA) and the Sydney Neuro Oncology Group (SNOG). In this photo the Professor is accompanied at the podium by Dr Helen Wheeler, a Director of SNOG. The Forum also heard presentations from a brain tumour survivor, a former carer, and a brain tumour care coordinator. In feedback from the audience many appreciated the special “sharing groups” where patients and carers met separately in small groups for an hour and discussed their common experiences. These groups were facilitated by experienced nurses and care coordinators. While welcoming access to the latest information from visiting experts, many patients and carers also look forward to opportunities where they can meet and converse with others who are in a similar situation to themselves. n
Joost en het gemene spookje (Joost and the mean ghost) A story about brain tumours by Michael Grotzer and Anna Sommer Original text by Swiss paediatric oncologist Michael Grotzer with illustrations by Anna Sommer. Now published by Stichting STOPhersentumoren.nl, Driebergen, The Netherlands. Translation: Martin Jan Spiering, Editor: Klaske Hofstee, ISBN 97-980-818-035-02 (hardcover, 36 pages), Price: Euros 29.95. Available from www.Bol.com or STOPhersentumoren.nl (http://www.stophersentumoren.nl/) This book has also been published in the following languages in other countries: Swedish (“Eugen och den dumma knölen”, edited by Barncancer Fonden), Danish (“Eugen og den fraekke knude”, edited by Barncancerfonden), Finnish (“Eetu ja paha patti”, edited by Schering-Plough Oy, Espoo), Norwegian (“Eugen og den ekle klumpen”, edited by Schering-Plough AS, Eiksmarka), and Italian (“Andrea e il folletto malefico”, edited by Essex Chemie AG, Luzern, Switzerland).
She added: “I hope that when I go to my old school again, that they will accept me as I’ve become. Since my operation I started to think differently about life and not everyone in my surroundings understands this.”
“Joost en het gemene spookje” (2011) is the Dutch translation of the original “Eugen und der freche Wicht” (2003) by Swiss paediatric oncologist Michael Grotzer with illustrations by Anna Sommer. Our first reviewer is 17-year old Lisa Bogaerts who lives in Lille, Belgium.
Above: Lisa Bogaerts
In summer 2010 Lisa was diagnosed with a brain tumour. Lisa said: “I had a tumour as big as an egg. More than 80% could be cut away during neurosurgery. Due to the operation I’m now visually handicapped with no lateral view on my left side. At the moment I’m in the rehabilitation center at Pulderbos (a specialized center for rehabilitation of children with brain injuries). I go to school here as well. I want to be a hairdresser.” 32
Of the book “Joost en het gemene spookje”, Lisa said: This is the story of a young boy, Joost, who has had headaches for some time. His mother gets worried and they go to see a doctor. The doctor examines him and refers him to a children’s hospital for an MRI. After this scan the doctor tells Joost and his parents the reason for the headaches: there’s a “mean ghost” (brain tumour) in Joost’s head. This story is told by someone who wants to explain this problem of the “mean ghost” to children. The characters are Joost, his parents, his sister Anita, the doctors, nurse Anja and finally Julie, his roommate. The mean ghost also plays a character in the story. The book is about illness, fear and friendship but also about hope. Joost’s tumour may grow so the tumour has to be medically removed. Joost is a little bit afraid. His parents try to distract him but Joost sees that they too are afraid. Then the big day of Joost’s operation arrives. He won’t notice anything due to the fact that he is in a deep sleep. When the operation is over Joost will be in intensive care for a few days. After these days he can return to his own room. When he does, Joost gets a neighbor, Julie. In her head there’s also a “mean ghost”, but her “ghost” can’t be removed because her tumour is very deep in her brain. So she will get chemotherapy instead.
Joost is getting stronger every day, but he has to have an MRI so the doctor can check if they caught the whole “ghost”. Oh no! On one of the photos you can see the really small “arm” of the “ghost” which remained. That’s really very annoying! This part of the story was the most catching for me. The remaining “arm” will be removed by radiation. Joost has radiation every day. After the last radiation session there’s a very big party at Joost’s home. All his friends and family are there. Even Julie, his neighbor in the hospital. It’s a beautiful and clear story. Also the drawings contain a lot of information. This book tells the story like it is and shows all the problems. This book receives an “A” from me! The second reviewer, Kirsten Vandebroek, a 36 year old religious studies teacher, lives in Linden, Belgium.
Kirsten is married and the mother of eight year old Jesse and nine year old Marieke. In December 2010 Marieke was diagnosed with an inoperable brain tumour and metastases in the spinal cord. During hospitalization from January to June 2011 Marieke had a lot of complications, including not being
able to walk or stand up. She spent time in the rehabilitation center at Pulderbos. Due to new complications Marieke was again hospitalized in October 2011 for an extended period. Her chemotherapy was stopped and radiotherapy was started. Marieke and her parents hope the tumour will be stabilized so that she will be able to continue her rehabilitation in Pulderbos. Kirsten said: “Joost en het gemene spookje” (“Joost and the mean little ghost”) tells the story of a family with two children, the youngest of whom (Joost) is suddenly faced with the challenges of a brain tumour diagnosis. During his stay in hospital, Joost meets Julie, a girl who is also battling a brain tumour and who has to undergo chemotherapy. Joost is not getting chemo, but when, after a check-up, it appears the tumour has not disappeared completely, he has to undergo additional radiotherapy. After that treatment, Joost still has to go in for regular check-ups, but the family celebrate the end of the radiotherapy by throwing a big party. Based on the book’s title, you would not expect the book to deal with such an emotional topic. The brief accompanying text explains in a realistic way what children who are diagnosed with a brain
tumour will face, such as tests, operations and treatments. No topic is shunned. What is so special about this book is that the illustrations not only brighten up the story, they also make it more attractive for young readers. Artist Anna Sommer’s particular style of illustrating, which differs from typical illustrations found in other children’s books, means that she depicts the story in a well-chosen manner. Her bright compositions, consisting of clearly defined colours independent of shadow effects or correct proportions are still surprisingly detailed. The illustrations may take some getting used to at first, but they will occasionally surprise you with their dose of subtle humour and will be appreciated by both young and older readers. Two stuffed toys, a monkey and camel, get a beautiful supporting role in the story. Their positions and facial expressions are used by Anna Sommer to weave a subtle leitmotiv into the story, which playfully embodies the emotional experience of the child and, at the same time, the reader. This is crucial, as the text is somewhat lacking in that respect. The end of the book comes across as a bit abrupt. Here, the author somewhat abandons his highly informative, rather ‘realistic’ style. The downsides and the burden of radiotherapy are
underrepresented and result in a fairly unrealistic ending based on what may be a fairly short time scale in the book. This impression is reinforced by the illustrations, for example showing Joost with almost a full set of hair, surrounded by young kittens and we even see him at the beach, sitting in a rubber boat. Fortunately, the story as a whole is not affected by this small lapse in timescale taking into account the length of time it takes to recover from intense treatment for a paediatric brain tumour. The very large font and brief text per illustration show that this book is primarily intended for young readers. There is occasional use of difficult words such as ‘intensive care’, ‘chemotherapy’ and ‘radiation device’. While the book’s texts may be aimed at younger, primary-school children, the illustrations are suitable for all ages. Despite the fact that some words, such as “cassettes”, “gym class” and “physiotherapy” will sound odd to modern, Dutch-speaking children from Belgium and the clear differences between Belgian and Swiss hospitals, this is a must-have, highly informative children’s book, which deals with many aspects related to the diagnosis and treatment of brain tumours in children. The book is also suitable as an educational resource for the patient’s classmates or siblings. n
They take the playroom to the child when a child is too sick or if the playroom is closed. Clowns in the Sky also funds children’s entertainer sessions at some of their hospital sites. The charity also raises research funding for the UK’s Samantha Dickson Brain Tumour Trust. For further information see www.clownsinthesky.org or email email@example.com n
Top: A children’s entertainer gets more than
Brain tumours are no laughing matter, but
Clowns in the Sky help put a smile back on a child’s face Clowns in the Sky is a small, registered charity which supports children with brain tumours and their families across England. They provide activity and portable sensory trolleys in oncology wards and shared-care units in many hospitals. These trolleys can be enjoyed at any time and provide a range of craft activities and distractions.
one smile!. Above: A Clowns in the Sky trolley, full of arts and crafts, and sensory items
Neurosurgery fascinates me By Joseph Megyesi, MD, PhD, FRCSC Staff Neurosurgeon, London Health Sciences Centre - University of Western Ontario, London, Ontario, Canada. Associate Professor, Department of Clinical Neurological Sciences - Neurosurgery, University of Western Ontario, London, Ontario, Canada. Chairman, Board of Directors, Brain Tumour Foundation of Canada
I was born in Toronto and grew up in London, Ontario, Canada, sometimes called “the other London”. It has a particularly strong record in the neurosciences: surgical treatment of difficult brain aneurysms (Dr. Charles Drake); home base of the international carotid endarterectomy trial (Dr. Henry Barnett); and advances in brain tumour management including chemotherapy for oligodendroglioma, 1p 19q markers for oligodendroglioma and the Macdonald criteria used for neuro-imaging (Drs. Greg Cairncross and David Macdonald). I did not come from a family environment that had a direct connection with medicine or research. My mother was born in Canada and worked as a high school teacher and guidance counsellor. That is probably what got me interested in reading, writing and other academic activities. My father was born in Hungary and came to Canada following the revolution in 1956, not able to speak any English. He got a job installing and troubleshooting telephones for the local telephone company, as well as being able to fix pretty much everything and anything around the house. Perhaps that is where I got some of my surgical abilities, though I think my father’s inherent skill as a “fixer/ builder” exceeds my own. The decision to pursue neurosurgery University meant narrowing down the slate and I concentrated on science. Hard to say why. Perhaps the problem-solving aspects and the research potentials attracted me. Medicine was rather a late decision. I had completed a four year undergraduate science degree and was thinking of graduate school when I 34
Above: Neurosurgeon Dr Joseph Megyesi (left) pictured with Charge Nurse Mary Lou Gough (right) and the cavitron in the operating room. A cavitron is an ultrasonic aspirating device that facilitates the removal of a brain tumour.
decided to apply to medical school and got accepted. The decision to pursue surgery and neurosurgery came more easily - I always found surgery a bit more “action-oriented” and neurosurgery involved the brain and that fascinated me. And in the end I did graduate degrees (MSc and PhD) during the course of my medical and neurosurgical training anyway. I was drawn to the brain tumour area for a number of reasons. I think anyone involved in medicine finds the “cancer problem” a challenge. And the brain tumour area combined this problem with neurosurgery. I was also influenced by those who helped to train me - in particular neurosurgeon Dr. Rolando Del Maestro with whom I did brain tumour research in London, Canada and surgeon/ researcher Dr. Judah Folkman with whom I did angiogenesis/brain tumour research at Harvard University in Boston, USA.
Coping with the emotional and psychological challenges arising from work As a neurosurgeon I see and operate on patients with both non-malignant and malignant brain tumours, as well as seeing general neurosurgery patients when I am on call. These interactions are primarily between my patient, the patient’s family and me. Operating on a patient obviously has its own stressors but your training and experience help to allay these, though they never completely go away (and if they did it might be the time to stop operating). For those patients with malignant tumours the discussions can be more complex and sombre, and having a neuro-oncology team engaged is of benefit to all. I have found that being involved with brain tumour “endeavours” that go beyond the direct patient level is a positive influence for me. These include research and teaching surgical residents and medical students. Perhaps the most satisfying endeavour, however, is my involvement with Brain Tumour Foundation of Canada. I have been involved with this organization for over a decade and have been the board chairman for the past five years. What might the next ten years bring? There is no doubt that the last few decades have seen significant advances in the neurosurgical treatment of brain tumours. The operating microscope, neuronavigation and image-guidance technologies, neuro-endoscopy and intraoperative neuro-imaging have all helped to maximize brain tumour resection and have helped to make it safer.
I anticipate that over the next ten years there will be continued advances made to optimize the safer resection of brain tumours. Moreover, my work with Brain Tumour Foundation of Canada and similar organizations in the US and abroad has also made me painfully aware that patients are rightfully concerned that there has not really been a major change in the mean outcome for patients diagnosed with the most malignant types of brain tumour, including glioblastoma. This should be motivation for all of us to work even harder. I am also encouraged by the increasing trend to address quality of life issues that concern brain tumour patients and their families. I think this trend will increase over the next ten years. The 30th anniversary of Brain Tumour Foundation of Canada. The year 2012 marks the 30th anniversary of Brain Tumour Foundation of Canada. The organisation was started as a grass-
roots endeavour in 1982 to help better support and educate patients diagnosed with a brain tumour as well as their families.
“PROBABLY my most active hobbies are hiking, photography and travel,” says Dr Megyesi. “I do my best to combine all three! In the past several years I have climbed Mount Kilimanjaro in Tanzania, walked the Milford Track in New Zealand, hiked the Inca Trail in Peru, trekked to Mount Everest base camp in Nepal, climbed some volcanoes in El Salvador, scrambled the Snowdon Horseshoe in Wales, walked the Cotswold way in England, and hiked the Kalalau trail in Hawaii. I take a lot of photographs on these trips and create yearly calendars which I have donated to Brain Tumour Foundation of Canada to distribute to their volunteers and donors. And on each trip I have carried the Brain Tumour Foundation of Canada banner
It has continued in this role and has also become a major supporter of brain tumour research in Canada and abroad. n
Above: In 2009 Dr Megyesi traveled to Nepal and trekked to Mount Everest Base Camp, at the foot of the highest mountain in the world. This photo was incorporated in a special calendar for Brain Tumour Foundation of Canada to give to their volunteers and donors.
to hold up upon completion of the journey (with an accompanying photo and monetary donation from me to the Foundation).”
Cancer and Poverty By Derek Giroulle, Health and Poverty Advocate, Belgium
Above: Sobreviviré’s logo symbolising hope
CANCER has many faces and cancerinduced poverty is one of the ugliest. “Instead of going on holiday, we’re making collages from free travel brochures at the kitchen table,” a young brain tumor survivor in Antwerp recently told me. A father - whose child was diagnosed with a brain tumor and spent nearly 18 months in hospital care - told me that he had to make a choice: feed his sick child or keep a roof over his family’s head. Due to the brain tumor his child was unable to swallow and thus required feeding through a stomach tube. The parents were suddenly confronted with an extra monthly medical expense of €1300 (approximately US $1700) to feed their child. That single cost alone exceeded the family’s monthly income of €1150 (approximately US$1500). Thanks to better and more effective treatments, survival from some cancers is improving. But there’s a downside to this scientific progress, a perverse social side effect: poverty. Sliding headlong into poverty All too often, one of the consequences of surviving cancer is that the cost of continuing medical care causes families to slide headlong down a slippery slope into poverty. As if this alone was not perverse enough, families with a child or adolescent diagnosed with cancer have the highest 36
risk and will tumble even faster down that slope.1 And to complete the vicious circle, families earning less than a median net income are the most vulnerable to cancer and chronic disease.2 Our organization, SOBREVIVIRÉ (Spanish for “Surviving”), is a new non-profit association in Belgium which supports children and adolescents with rare or chronic diseases, and their families. Most of our patients have been diagnosed with brain tumors.
Above: Derek Giroulle of SOBREVIVIRÉ, a new non-profit association in Belgium which supports children and adolescents with rare or chronic diseases, and their families.
SOBREVIVIRÉ provides help to young patients in overcoming communication problems with medical staff. We help connect families to available care and other facilities such as psycho-social support. We also try and fight the ferocious poverty that strikes these families. Recent studies in Belgium have made it abundantly clear that families of young patients surviving with a rare disease like a brain tumor are in especially serious danger of sliding into poverty due to both medical and non-medical expenses including after-care, and the loss of the patient’s independence.3
Single parent and migrant families who are already in a precarious financial situation even prior to the onset of the disease are particularly vulnerable to the psychological, social, economic and financial consequences of a seriously sick child in the family. 4 Impact on income In 2011 The Flemish Cancer Patient Association (VLK) carried out scientific fieldwork together with the University of Leuven (KUL) into the financial impact of medical and non-medical care-related expenses on cancer patients. The VLK has a cancer fund for families with benefits for sole income. This means that these people have an income which is structurally below the absolute poverty minimum (APM).5 The VLK’s cancer fund reports that over recent years there has been an increase both in the number of requests for financial support and a significant increase in the amounts of medical and non-medical carerelated expenses.6 Many public city hospital directors report that they have an increasing number of unpaid care bills, with 40% being overdue and 20% being only partially or completely unpaid and often unrecoverable. In major cities like Antwerp or Brussels, where there are significant inner city poverty issues, these problems are reported to be worse, particularly over the last ten years.7 Struggling to survive In our association we encounter mainly families who have no room in their already-meagre budget for the financial consequences of a serious illness such as a brain tumor. Additionally, low-income parents of a brain tumor patient may be exposed to high risks of losing their jobs due to: n their frequent absences from work which are linked to the child’s disease and
treatment, or to psychological problems like depression of the parent n the fact that employers don’t like temporary workers who are preoccupied with a sick child. The patient isn’t the only one to suffer psychological consequences. Family members suffer too and poverty is like an infernal spiral. Tight budgets induce social isolation and mental issues (anxiety and depression). Financial problems provoke a breakdown of the primary support network and further social isolation. A patient’s siblings tend to suffer exclusion at school. The necessity for cheaper accommodation causes more health issues for the family which in turn further impacts on the family’s financial situation. Politicians, activists and the povertystricken At conferences and meetings we as advocates talk and debate with politicians who seem to publicly and emphatically sympathize with the predicament of cancer-induced, poverty-stricken families. The same politicians pledge their support to remedy these unacceptable and devastating situations.
I believe politicians make these promises in good faith and that they honestly mean what they say. I believe that they have the intention to keep their promises - until more pressing matters or different priorities surface. Politicians in Belgium tell associations like ours that poor people should come and talk to them (the politicians) about the problems they face. Unfortunately poor people are so preoccupied with their daily survival that they have no time to spare. They don’t have the contacts through whom they can make appointments to meet the politicians. And they certainly don’t have the nice suit and tie to wear to the Parliament building. My heartfelt plea is this. Let sick people heal without the crushing worries that can accompany a cancer diagnosis such as a brain tumor. Let us all help eliminate cancer-induced poverty, one of the ugliest faces of this devastating disease. n
Notes: 1. Study on Impact of Medical Expenses, Flemish Cancer Patient Association (VLK), Ward Rommel, 2011 2. Children and adolescents living in poverty in Flanders, Flemish Network of Associations Representing the Poor (VNVA), Tine Willekens & Jan Van Gils, Flemish Government, 2010 ; Children in poverty, Interuniversity Group for Research into Poverty (IGOA) Katrien Steenssens et al, IGOA, FOD-SFP (Federal Government Department of Social Security) 2008 3. Study on Impact of Medical Expenses, op.cit. 4. Federal Yearbook on Poverty, Centre on Inequality, Poverty, Social Exclusion and the City (OASeS), University of Antwerp, FOD-SFP (Federal Government of Belgium - Department of Social Security) Acco 2010/2011/2012 5. Statbel, FOD-Economie (Federal Government of Belgium - Department of Economy), http://statbel. fgov.be/nl/statistieken/cijfers/bevolking/, accessed February 2012 6. Study on Impact of Medical Expenses, op.cit.
Editor’s note: SOBREVIVIRÉ has a preliminary website (most
7. Study on Poverty-indicators, Steunpunt armoede
of which is in Dutch for their target audience) at http://sites.
bestrijding, FOD (Federal Government of Belgium),
external communication, 2004
also have a Facebook group to which they can respond in English: http://www.facebook.com/groups/sobrevivirevzw/
A unique, weekend-long theatrical experience These photos are from an event entitled “Fissure”. This is an explanation: “Fissure was a unique weekend-long, site-specific theatrical experience, created by acclaimed performance maker Louise Ann Wilson, working with a rich and diverse team of artists and scientists in and around Ingleborough, at the heart of the Yorkshire Dales (UK). “Over three days from the 20th to the 22nd of May 2011, an audience of 60 people embarked on a walking exploration of the breath-taking natural terrain of the Dales, covering 20 miles each. Fissure took as its starting point the death of a muchloved young woman from a brain tumour. This deeply personal story served as the foundation of a new
legend for the landscapes in which Fissure is situated, a tale that fused neurological and geological mapping with archetypal, universally shared tellings of life, death, the underworld and rebirth. “Fissure was made with an awardwinning creative team, including poet Elizabeth Burns, choreographer Nigel Stewart and composer Jocelyn Pook. Also involved were leading neuroscientists Dr. Michael Brada and Chris Clark, and a range of earth and environmental scientists. Fissure was a part of The ReEnchantment, Artevent’s national arts project exploring our relationships to place. See www.artevents.info for more information on Fissure and other projects.” A total of 1200 miles was achieved by walking participants during the Fissure
theatrical experience and these miles have been donated to the IBTA’s “Walk Around the World for Brain Tumours”. n
Paediatric neuro oncologist Annie Huang talks about her challenging work M
y name is Annie Huang and I’m a paediatric neuro-oncologist, clinicianscientist and Associate Professor in the Department of Paediatrics at the Hospital for Sick Children (“Sick Kids”) in Toronto, Canada. I’m also a principal lab investigator at the Arthur and Sonia Labatt Brain Tumour Research Centre at Sick Kids. Our lab focuses on the study of rare paediatric embryonal brain tumours that mostly arise in younger children. Our goal is to understand how cellular and molecular changes occur to make these tumours aggressive and refractile to existing treatments, and to ultimately inform development of novel treatments. In current studies, we are exploiting leading edge genomic and cell biology techniques as well as animal models to map novel genes and cell signalling mechanisms in childhood primitive neuro-ectodermal brain tumour (PNET) - a rare, frequently fatal and poorly studied tumour group. I was born in Dhaka, Bangladesh and grew up in Karachi, Pakistan, before moving to Canada in my teens. My parents and siblings were/are in finance, business, teaching and architecture. I am the odd person in my family; the only one to be involved in medicine. What attracted me to this profession? My love for science came first in junior school when I wanted to become a zoologist. Medicine followed much later when I became interested in the science of human diseases. I was attracted to the brain tumour area because it was and still remains an uncharted territory with many questions that need to be answered and exploited for better patient care. Paediatric brain tumours carry a huge burden for the young patient and his or her family. Unfortunately many of our patients still die of their disease. From the medical viewpoint, paediatric palliative care is a challenging field in part because the 38
Above: Dr Annie Huang
dying child can span a wide spectrum of chronologic and developmental ages. We also have to consider both the needs of the child and the family. Often that can be a hard balance because losing a child is not something anyone is ever prepared for. I strongly believe that until we cure every child, resources towards enhancing direct delivery as well as study of palliation science, should also be a top priority. I personally believe that palliation is as important a job as curing a child, as the best palliation will ultimately help families and other caregivers pick up the pieces and move forward constructively. As far as significant breakthroughs in brain tumour therapies over the next ten years go, I think we could most certainly expect more refinement in the way we diagnose and treat brain tumours. Specifically, we will have more molecular tools to sub-type tumours that are now called the same tumours and to better tailor treatment according to the genetic make-up of the tumours, as well as to sequence treatment differently. We will also continue to see improvement in surgical, imaging and radiation techniques that will contribute to greater precision in treatment, and overall better patient outcome.
The tragedies we witness are a great motivator to do better as a parent myself and of course to do better as a physician. My spouse who is also a physician and my faith help me with unburdening and coping with the emotional and psychological challenges arising from my work. Seeing how devastating brain tumours are makes me very grateful for the health of my own family. I do find ways to relax. I love music (piano instrumentals in particular), books, the visual arts and the outdoors. I enjoy gardening, model building with my children and knitting when I am inspired. I absolutely love travelling. n
Corri al Massimo per IRENE Dr Andrea Pace from Italy advised that the IRENE annual 5 kms run/ walk was held on 29th October 2011. The event is called the “Corri al Masimo per IRENE”. “IRENE” stands for “Instiuto Regina Elena di Neurochirugia e Neurologia”. Here is the poster for the event which prominently displays the IBTA logo. n
Easy it’s not. Brain Tumour Research was launched in April 2009 to raise the profile and funding for brain tumour research in the UK and improve the chances for brain tumour patients. Charities who have united together to create Brain Tumour Research include: Ali’s Dream, Anna’s Hope, Astro Fund, Brain and Spine Foundation, Brainstrust, Brain Tumour Action, Brain Tumour Research and Support, Brain Tumour Research Campaign, Brainwaves, Charlie’s Challenge, Children’s Brain Tumour Research Centre, Ellie Savage Memorial Trust, Ellie’s Fund, Headcase, Levi’s Star, The Diana Ford Trust, The PPR Foundation and Thorne Mason Trust.
Brain Tumour Research. A tough nut to crack.
www.braintumourresearch.org Tel: 01296 733011 firstname.lastname@example.org
« More common than you think! « More challenging than you think! « More joint action than you think! Rare Cancers Europe is a multi-stakeholder partnership initiative addressing methodological and regulatory barriers in rare cancer care, the need for centres of expertise and European reference networks, barriers to patients’ access to care, education of healthcare professionals and access to information on rare cancers. For more information, please visit www.rarecancerseurope.org.
Registered charity no: 1093411
The Joseph Foote Trust and Brain Tumour UK have joined forces to create a new, larger Brain Tumour UK.
“ When I was diagnosed I felt
isolated, scared and confused. Brain Tumour UK was there for me.
We work throughout the United Kingdom to:
Support those who have been affected by a brain tumour
Fund research to provide hope and deliver better treatment outcomes for patients
Raise public awareness and campaign with brain tumour patients all over the UK
For more information on our research, support, campaigns, or to find out how you can help, visit us at:
braintumouruk.org.uk or call +44 1494 549 180
Registered charity 1117538 (England & Wales) and SCO42096 (Scotland)
Why do we need brain tumour patient advocates? By Kathy Oliver, Co-Director, International Brain Tumour Alliance and Patient Issues Section Editor, European Association of NeuroOncology Magazine
atient advocacy may be more of an art than a science, but without it brain tumour patients may find themselves consigned to the shadows on the cancer map. There are 200,000 people in the world each year who develop a primary malignant brain tumour.1 Even in the most powerful countries on Earth, these people and the many, many thousands of others who develop low grade, benign and metastatic brain tumours can be lost in a maze of uneven and inequitable care. In the poorer, less-developed countries, even the most basic of brain tumour therapies and elements of palliative care are still not available. Additionally, many governments and major cancer control organisations have prioritised prevention, screening and healthy lifestyle campaigns in the fight against cancer. These are all excellent initiatives of course. But unfortunately brain tumours cannot be helped by this approach as there is no realistic screening for them and their causes are, as yet, generally unknown. Brain tumour advocacy groups - whether local, regional, national or international - have an important role to play in ensuring that patientsâ&#x20AC;&#x2122; views are listened to and acted upon so patients are not marginalised, discriminated against or excluded in any way from obtaining optimal care. Brain tumours are the only cancer to directly attack a personâ&#x20AC;&#x2122;s physical, behavioural and cognitive abilities and this, combined with their dire prognosis, 40
means that most patients, their families and caregivers are often too debilitated and mentally and physically exhausted by the disease to have the energy to fight for better therapies, care and support themselves. The lack of durable therapeutic options; the fact that brain tumours are responsible for the highest cancer burden with an average of over 20 years of life lost per patient 2 and the significant economic strain that these rare tumours inflict - because cutting edge brain tumour therapies certainly donâ&#x20AC;&#x2122;t come cheap - all add up to a tremendously daunting challenge. This is clearly a patient population in desperate need of highly-focussed advocacy efforts in order to ensure that (1) there is much more research funding available for the development of new
therapies; (2) there is adequate support and information available for patients and carers and (3) there are safety nets in place for patients facing an assault on their economic stability. In the last decade or so a number of very determined brain tumour advocacy groups have, despite the enormous odds, arisen - many of them from the grass roots. Some of these have been established by carers or former carers of brain tumour patients. It often falls to this group of people to advocate for their loved ones who may not be able to do so themselves. And, in some cases, brain tumour patients have become involved in advocacy groups because, even in the brain tumour arena, there is a small cohort of patients who confound the statistics and survive for an extended period.
Above: A European Association of NeuroOncology (EANO) session at the 2011 European Multidisciplinary Cancer Congress in Stockholm, Sweden where IBTA Co-Director Kathy Oliver was presented with an award from EANO. Kathy is very active in pan-European advocacy initiatives, both for brain tumours and rare cancers. Pictured with Kathy are (centre) Dr Riccardo Soffietti, EANO Board Member and EANO magazine Managing Editor from Turin, Italy and (right) Professor Wolfgang Grisold, EANO President and EANO magazine Editor-in-Chief from Vienna, Austria.
The International Brain Tumour Alliance has encouraged brain tumour advocacy organisations in Lithuania, Cyprus, Belgium, Spain, Denmark, South Africa, Zimbabwe and Australia. These organisations augment those advocacy groups which have already been firmly established in places such as the United States, Canada, some countries in mainland Europe and the United Kingdom. So how can brain tumour patient advocacy organisations help keep brain tumours out of the shadows on the cancer map? Advocates can vigorously lobby governments for more recognition of the very specific and unique challenges which brain tumours present. They can campaign for increased levels of government spending on brain tumour research. They can communicate with regulators and health technology assessment (HTA) bodies to highlight the patient perspective. Brain tumour advocacy groups can provide input into the design of clinical trials, even at the early stages, to help ensure that such studies are more efficient,
effective and more widely acceptable to patients. Indeed, a three year European Union funded project called â&#x20AC;&#x153;PatientPartnerâ&#x20AC;? suggests that the vast range of experiential knowledge which patient advocates can bring to the research arena results in better recruitment strategies; more patient-relevant research findings; wider dissemination of those findings and improved information leaflets.3 Brain tumour advocacy groups can also bridge any gaps in understanding between the scientific and medical community on the one hand and patients and carers on the other. The collective voice of brain tumour patient advocacy groups around the world is growing in intensity. International cooperation between such organisations benefits patients and their carers by providing greater knowledge, greater collaboration and greater hope. n
University of Illinois at Chicago, Chicago, Illinois, USA), Worldwide Incidence of Primary Malignant and NonMalignant Brain Tumors. (Study commissioned by the International Brain Tumour Alliance - IBTA) (2) Burnet NG, Jefferies SJ, Benson RJ, Hunt DP, Treasure FP, Years of life lost (YLL) from cancer is an important measure of population burden - and should be considered when allocating research funds. British Journal of Cancer (2005) 92, 241-245, doi: 10.1038/ sj.bjc.6602321 (3) PatientPartner, www.patientpartner-europe.eu/en/ home, accessed 20 May 2011.
Reprinted with the kind permission of the European Association of NeuroOncology Magazine: EUR ASSOC NEUROONCOL MAG 2011; 1 (1). As well as a regular patient issues column, EANOâ&#x20AC;&#x2122;s official online magazine contains peer-reviewed articles and reviews, case reports, congress reports, letters, society news and announcements from around the world with a special focus on Europe and the EANO
Member States. To view the entire, free-access EANO
(1) Kruchko C1, Propp J2, Schellinger K2, McCarthy
magazine from which this article is reprinted, visit
B2 (2007) (1 Central Brain Tumor Registry of the
United States, CBTRUS; 2 Division of Epidemiology,
The Norwegian Brain Tumour Association
Gioâ&#x20AC;&#x2122;s Fund for research on brain tumors As long as we continue to nourish research on the brain tumors of our children, we nourish hope.
The Association was established in 2009 and is an independent, national organisation for people who have or have had brain tumours, their families and other interested parties.
Please see www.hjernesvulst.no
If you are interested to sign in as a member or learn more about us, please contact us at email@example.com
Among projects currently supported
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Our walk in London for the 2011 ‘Walk Around the World for Brain Tumours’ By Maxine Bailey, photographer (and long term brain tumour survivor), United Kingdom
I was diagnosed with an oligodendroglioma in 2000 having suffered symptoms for two years. And while the tumour diagnosis was a big shock, it brought me into a different relationship with the world and gave me a different perspective on life. I came much closer to appreciating how beautiful the world is. I turned to photography after my diagnosis and rediscovered a fresh, new world. I find photography therapeutic, and it grounds me - sometimes literally (see upper right photo)! In 2011 I thought it might be a great idea to combine my love of photography with my efforts for the International Brain Tumour Alliance’s annual “Walk Around the World for Brain Tumours” (see www. theibta.org). My partner, Kerry, and I nearly missed the start of the IBTA’s “World Walk” as I was dealing with my brain tumour. But we did manage to do a walk around London when I had recovered and was out and about again. The delightful weather we had been enjoying was beginning to turn so I grabbed the camera and we headed to some of the areas in London in which we most enjoy a walk. 42
n the first day we headed to Finsbury Park which is a 115 acre beautiful site near where we live. Here I shot a photograph of a row of beautiful trees, clad in burnished autumnal colours. It’s this time of the year that nature shows her gentle power. Below is one of my favourite photographs from our “World Walk”.
Then we walked to Camden Lock which is a very busy tourist spot in London. But instead of photographing the crowds of visitors here I wanted to capture something different - the quiet reflections (right and above right) in the Regent’s Canal for example. I like to look beyond the obvious.
We continued on our “Walk Around the World for Brain Tumours” the next day and headed to the River Thames and then to St Paul’s Cathedral. It’s difficult shooting a building that is so famous and so frequently photographed, however I made an effort to take the images of St Paul’s in a few different ways. I particularly like the one of the pigeon and St Paul’s reflected in the large silver ball. (below)
Then we walked to the Millennium Bridge (lower right) which was built in 2000 (of course!) and is a steel footbridge linking Bankside with the City of London. We were lucky to get a shot here at all, as it was very busy with people streaming across it. The sky was moody and threatened rain, but provided me with some good contrast and light. St Paul’s Cathedral from the Millennium Bridge (above) looks like it was specially illuminated against the hectic London skyline. And of course, we can’t forget about Big Ben, one of London’s iconic images, as seen from my own unusual angle while crossing a nearby bridge. (far right) All in all, I shot loads of photographs on my Walk Around the World for Brain Tumours and Kerry and I totalled 13 miles between us which we’ve donated to the IBTA’s “World Walk”. “Our brain tumour journey,” said Max,
“has certainly been a rollercoaster of hope and, at times, despair. But I am very aware of how lucky we are in relation to a lot of other people in our situation all over the world who perhaps don’t have access to the same treatment that we have.” n
Editor’s note: Max is currently exhibiting her photographs at the Finsbury Park Cafe in London. © All photographs copyright, Maxine Bailey of Easthouse Photography (www.easthouse.com) Brain Tumour
A drug trial from a patient perspective By Christine Buckingham, brain tumour patient, Australia The following is the text of a presentation given by a Melbourne (Australia) patient in November 2011 about her experiences of being on a clinical trial.
each day. Charles and I have been able to balance the trial routine with enjoying life and during the past two and a half years, we have gone on a number of mid-week breaks to the family beach house at Sorrento, weekends away at my sister’s farm in Alexandra as well as short holidays to Tasmania, New Zealand and Darwin.
ood evening ladies and gentlemen. My name is Christine Buckingham, I am on the Centric drug trial and I am a success story. So far… Tomorrow, I will have my 271st drug infusion. I attend Day Oncology twice a week and have done so since the end of March 2009. It has become part of my ‘normal’ weekly routine. I have completed the 18 month trial of 156 infusions and the drug company running the trial continues to provide the drug on an ongoing basis. I have had the most infusions of anyone on the trial in Australia. I am lucky that the only side effect I experience is some tiredness following treatment. 2008 was a life changing year for me. I met my husband Charles when he was on holiday from Scotland and we married two months later in Melbourne in November 2008. So it certainly was a whirlwind romance. My brain tumour story began in February 2009 with some double vision, a trip to the optometrist and a referral to an eye specialist who organised for me to have an MRI scan the following day. I took the day off work to have the scan, never ever considering that my world was about to be turned upside down by the news I was given on that fateful Friday afternoon. Being diagnosed with a brain tumour is devastating. My particular tumour is an oligodendroglioma. It is never a good time to receive a cancer diagnosis but give me a break... Charles and I had only been married for two months. The diagnosis occurred on Friday afternoon and I had brain surgery the following Tuesday. On the following Saturday, my dad was scheduled to have open heart surgery and very sadly he died. It was a horribly sad week for our family. 44
Above: Christine Buckingham, an oligodendroglioma patient, delivering her presentation on participation in clinical trials at a conference at The Austin Hospital, Melbourne
The Centric trial After a four week break following surgery I commenced on the Centric drug trial that ran simultaneously with 30 sessions of radiotherapy (five days a week for six weeks) and six monthly cycles of chemotherapy. After diagnosis, the first 12 months, but particularly the first six months, were the hardest both physically and psychologically. During those early months I had to come to terms with having a terminal illness and I felt really ripped off and so alone not knowing what the future was going to hold. I had always assumed I would be like all of my relatives and die of old age. Agreeing to go onto a drug trial was easy for me. My attitude was that if there was a chance it could prolong my life that I would grab it with both hands. For some people however, making a commitment to a drug trial is difficult, particularly when you have a terminal illness. You have to weigh up your options between committing to extra ‘treatment’ which may or may not help or just getting on and enjoying what time you have left. Many of these decisions need to be made shortly after diagnosis when you are at your lowest and in your most confused state. I am lucky to have a wonderful husband and we have fun and endeavour to enjoy
A visit to Scotland Last year we spent three months in Scotland and I continued to have treatment at the Aberdeen Royal Infirmary. Charles really wanted us to spend some time together at his home in Ellon, 18 miles north of Aberdeen. Six months prior to travelling to Scotland, my trial nurse commenced negotiations with the drug company which arranged for me to continue treatment at the Aberdeen Royal Infirmary. Dr Lawrence Cher (my Australian oncologist) arranged a neuro-oncologist referral and a trial nurse allocated to me for the infusions. I am very grateful to Lawrence and everyone at The Austin Hospital who worked so hard to get these arrangements in place. The whole purpose of a drug trial is to find out whether a drug is beneficial or not. Trial protocols dictate that patient data be collected and sent back to the drug company. Even the doctors are not informed about the progress of the trial, except for what are called “Suspected Unexpected Serious Adverse Reactions” (otherwise known as “SUSARs”). Dealing with uncertainty becomes part of your life. The full report on the effectiveness or otherwise of the Centric trial will be released after the study finishes mid next year. Join the “club” To get into our exclusive Centric “club”, the brain tumour had to be a specific grade and be of ‘methylated’ status. This means that the DNA structure is less robust and more responsive to treatment. In the 20
months that the trial was open to new patients at The Austin, only five of us qualified despite well over 20 patients being screened. Four of us are on the drug regime. One person became part of the ‘control group’. I found that when I was diagnosed with cancer that my world shrunk. I lost my career, income, and status. My contact with colleagues diminished over time. Most importantly I had to learn to come to terms with having a terminal illness. A cancer diagnosis is not all bad, however, and on the positive side I gained more insights into what is really important in life and I found my twice weekly hospital visits provided me with a ‘routine’ (I refer to it as my “part time job”). My trial buddies and their partners have become close friends. I also consider the day oncology staff my friends. I have made some other friends through day oncology people that I would never have met but for having cancer. I was first on the trial and six months later I got my first trial buddy and good friend. This was wonderful as I was very lonely during those early months and having another person to share the experience with was great. I was able to give him the benefit of my experiences and as the next two members joined the
group we were able to give each other support and encouragement. This support was really important as you have to walk in our shoes to really understand what it is like to have a brain tumour. Our art sessions Treatment this year has been particularly enjoyable as on a Monday we have an art session with a lady who is studying for her masters in art therapy. We all love the sessions and I have started taking weekly group art lessons in Heidelberg (in the Australian state of Victoria). So art has become a new hobby for me. Art therapy is certainly consistent with the ‘wellness’ concept proposed for the Olivia Newton John Cancer and Wellness Centre at our hospital and we hope that these sessions continue next year. Another advantage of participating in a drug trial is the close monitoring we get. If a medical problem arises it is picked up quickly and doctors have access to an international network of specialists. For example my trial buddy who I mentioned above required two operations earlier this year and through the doctors at The Austin he was able to access the best surgeons in the fields in a very timely manner. Another woman who is also on the trial had to have an additional brain surgery
a few weeks ago. From the new tumour being spotted on the MRI scan to surgery it took ten days and it is estimated that the new tumour had only been there for about three weeks. I feel very lucky that I live close to The Austin and have access to very skilled medical practitioners. I am sure that my outcome might not have been so favourable if I was living in a remote area and did not have the opportunity to go to The Austin and participate on a drug trial. In conclusion, I would encourage you to consider going on a drug trial if the opportunity arises. We need to get a cure for brain tumours. If by participating on a drug trial helps us and/or other patients in the future I think it is worth a try. Make the most of every day My other piece of advice is to make the most of every day and remember that no one knows when their time is up. ‘Life is terminal’ so just get on with it! I would like to finish this speech with a little saying... ‘Life is not about waiting for the storm to pass, but to dance in the rain.’ Thank you n
Brain Tumour magazine distributed in 106 countries Brain Tumour magazine will be distributed for free in 106 countries this year. There is no other magazine like it, which reaches deep into the international brain tumour community and includes patients, family members, health professionals, researchers, scientists, and commercial entities. Twelve thousand copies will be printed and 7,000 will be mailed directly to contacts on the IBTA’s database. The remainder will be distributed at relevant scientific and patient conferences. Brain Tumour magazine is read in these countries:
Afghanistan n Albania n Algeria n Argentina n Australia n Austria n Bahrain n Bangladesh n Belarus n Belgium n Bhutan n Bolivia n Bosnia n Brasil n Bulgaria n Cameroon n Canada n Chile n China n Colombia n Congo n Costa Rica n Croatia n Cuba n Cyprus n Czech Republic n Denmark n Egypt n Estonia n Ethiopia n Finland n France n Georgia n Germany n Ghana n Greece n Hong Kong n Hungary n Iceland n Iran n India n Indonesia n Ireland n Israel n Italy n Japan n Jordan n Kenya n Korea n Kyrgyzstan n Latvia n Lebanon n Libya n Lichtenstein n Lithuania n Luxembourg n Macau n Malaysia n Malta n Mauritania n Mauritius n Mexico n Morocco n Namibia n Nepal n Netherlands n New Zealand n Nigeria n Norway n Pakistan n Panama n Paraguay n Peru n Poland n Portugal n Qatar n Romania n Russia n Saudi Arabia n Serbia n Singapore n Slovakia n Slovenia n South Africa n South Korea n Spain n Sri Lanka n Sudan n Sweden n Switzerland n Syria n Taiwan n Thailand n The Philippines n Turkey n United Arab Emirates n Uganda n Ukraine n United States n United Kingdom n Uruguay n Venezuela n Vietnam n Yemen n Zambia n Zimbabwe n Brain Tumour
It’s an honor to work with brain tumor patients By Terri Armstrong, PhD, ANP-BC, FAANP UT MD Anderson Cancer Center, Houston, Texas, United States
Terri Armstrong, PhD, ANP-BC, FAANP, is Associate Professor/John S. Dunn Distinguished Professor in Oncology Nursing in the Department of Family Health at The University of Texas Health Science Center (UTHSC-SON). She is also Adjunct Associate Professor, Department of Neuro-Oncology at the MD Anderson Cancer Center. Here, Terri explains why she originally became a nurse practitioner in this specialist field and what challenges she faces. MY childhood experiences led me to want to be a nurse. I was born in a small town, Mingo Junction, in Ohio, located along the Ohio River. My mother worked in an Emergency Room in our community hospital. My sister is also a nurse. Most evenings around the dinner table were filled with stories of patients. In high school I volunteered at a local nursing home where my sister worked. While I was in college, my mother was diagnosed with leukemia and soon after that both my great-grandmother and grandmother were diagnosed with ovarian cancer. I was able to spend most of my clinical training rotations in an oncology unit, as I knew I wanted to work in this area. My first job was at The Ohio State University Hospital and I was fortunate to be able to bring my mother there and to help care for her. Sadly, I lost all three of these important women in my life. Because of my personal experience, I knew I wanted to learn more and expand what I did to help people with cancer, so I went back to school to obtain my Master’s in oncology, and then a post-Master’s as an adult nurse practitioner. 46
symptom burden and improve their quality of life. It is an honor to meet people and help them during one of the most difficult times in their lives. My experience of caring for my own mother taught me so much and gives me the strength to support those who are diagnosed with brain tumors, and their loved ones. Having friends who work in the same field and with whom I can talk is key.
Above: Terri Armstrong, on vacation with her 14 year old daughter Grace. Terri has had several hobbies over the years, including hunter-jumper horseback riding, rock climbing, and cooking. She adds: “My primary focus now is supporting Grace’s hobbies, one of which is fencing.”
Choosing to work in the brain tumor field At this point in my career I had a choice: to continue in the care of people with leukemia, or work with Dr. Mark Gilbert at The University of Pittsburgh Medical Center. I had worked with Dr Gilbert in his clinic and was so drawn to the brain tumor patients and inspired by the fantastic care he provided, that I decided this was the field for me. That was in the early 1990s. I have continued to be in a collaborative practice with Dr. Gilbert for over 20 years and am currently practicing at the MD Anderson Cancer Center. I am glad I chose this path. About ten years ago, I knew I wanted to find the answers to questions that I had when I provided care, so I obtained my PhD and began work on understanding symptoms of brain tumors and exploring the biologic basis for these symptoms in an effort to help people to have reduced
The care of brain tumor patients is evolving We are on the cusp of a better understanding of the pathology of brain tumors and personalizing treatment. In my area of symptom research, we are recognizing the importance of understanding the impact of the tumor and treatment on the individual person and treating this. I think the breakthroughs will be constant, but small and building on each other incrementally. My role as a faculty member and researcher at UTHSC-SON also involves being active in the Collaborative Ependymoma Research Network (CERN) which is comprised of a dedicated group of scientists and adult and pediatric neuro-oncologists working hard to find new treatments for this type of rare brain tumor. The vision of the CERN Foundation is to never lose a patient to an ependymoma and our goal is to find a cure for this type of brain tumor. As project leader for Outcomes Research in this network I lead several studies including one looking at the clinical trajectory of people with ependymoma and collecting tumor tissue, as well as a longitudinal survey in which patients report directly to us on what their experience of the disease has been and continues to be.
Within CERN we also recognize the importance of assessing the impact of treatment on the patient, so every trial has a component looking at the symptom burden of people participating in the trial. Lastly, I am involved in outreach and education specific to people with ependymoma. I help them to link with other great groups and resources that are out there.
we have the opportunity to “personalize” the diagnosis. Currently a GBM is a GBM, whereas there may actually be many subtypes of this particular tumor. Identifying these will allow us to tailor therapy to each individual, improve prognosis and hopefully reduce unnecessary toxicity.
Major challenges, but exciting times With brain tumors in general, we currently have some major challenges. For example, we can’t yet identify who is at risk for neurocognitive dysfunction, seizures, aphasia or even complications such as deep vein thrombosis (DVT). We have to sit and wait and see if things happen and then react. If we can identify who is at risk and focus on prevention of these problems it would be a whole paradigm shift and lead to improved quality of life (QOL) for our patients. In terms of what’s really exciting in the field of brain tumors at the moment,
Topping my wish list for brain tumor patients would be a cure of course, but a cure without residual disability. I would also hope to see an increased focus on awareness and resources to help those already diagnosed, and those yet to be diagnosed, so they can cope better with the disease journey. n
Challenges on the weather front, but a great success in the end! A hurricane coincided with the 6th annual Kortney’s Challenge so it was postponed to Labor Day. Kristen Gillette (Kortney’s mum and Founder/President of the Kortney Rose Foundation) emailed the IBTA to say that 400 miles was contributed towards the “Walk Around the World for Brain Tumours” target when the Challenge was eventually held - on a
day with much better weather. Here is a very young participant who contributed to the mileage grand total. n
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A survivor’s story “Into the Light”. Clint Beattie. Ark House 2011. 176 pps. Pbk. ISBN 9781921589683. $19.95 AUD from www.intothelightbook.com
Above: Cover of Into the Light Left: Clint Beattie
THIS book is the story of a young man’s journey with a brain tumour from age 12 to 29. Clinton Beattie was diagnosed with a tumour which caused hydrocephalus in 1994 and endured 14 operations on his brain to try and remove the tumour and to insert, reinsert and clear shunts designed to help remove the fluid that was causing migraines, headaches and double vision. His youthful dreams of becoming a star cricket and soccer player were thwarted by the tumour but as he and his family wrestled with the challenges thrown at them he recommitted to his Christian faith and now works with 48
people with a disability helping them to obtain employment.
including some honestly sketched but horrendous episodes.
Valuable insights His story provides valuable insights as to what Clint experienced as a brain tumour patient and now as a survivor. He tells us about the physical and psychological pain he endured, the expectations and failures of several surgeries, the pessimism displayed by some doctors, and the comfort and benefits he believes he received from complementary approaches. His older brother even attempted to help him by compiling a visualisation tape complete with a sound-alike Arnold Schwarzenegger voice exhorting him to defeat the malevolent tumour. Clinton has used his experiences to tell how he felt his challenges and responses made him more appreciative of his belief in God’s role in his recovery.
Greatest hurt There was the time they waited an entire weekend for an MRI, to be met by the rudeness and coldness of one of the hospital staff members. There were other annoyances such as the nurse who fetched a registrar but spent five minutes flirting with him before he could examine Clinton. The greatest hurt was inflicted by a headmaster who obstinately refused a request that Clinton be allowed to join his schoolmates at their Year 12 Formal. Bronwyn writes: “I shall never forgive that headmaster, never”. But there are also stories of extreme kindness from certain medical staff and others. Clinton and his mother could have allowed those hurts to get them down but they did not. Lest it be thought that his father was absent, Clint’s dad Ross was walking every step of the journey with them. Writing in 2011 they believe the tumour has calcified even though the medical staff believed it had earlier developed into a Grade 3/4 malignant tumour. Clinton is a survivor. He has now married and in April 2012 he and his wife were expecting their first child despite his having spent two and a half years on the chemotherapy drug Temodal (temozolomide).
Readers should persevere Readers of this book will find that there are dozens of insights - albeit some of them very direct and not a few of them upsetting - into what it is like to be a brain tumour patient and how Clinton has worked around the daily problems. For example, Clinton loved swimming but at one stage he was prone to seizures so extra flotation material was sewn into his wetsuit as a safeguard against his drowning. Towards the end of the book his mother Bronwyn contributes her own chapter about her perspective of her son’s journey and her story complements much of what has been described earlier in the book. Bronwyn is an astute chronicler of what it is like to be a mother concerned about her son’s progress. She writes about how Clint experienced the medical system,
Pitched at two audiences The book is pitched at two audiences. The first audience comprises those who might wish to read about a young man’s triumph over adversity by his reliance on his Christian faith to get him through a challenge to his very existence. The second audience will be those who are the brain tumour patients and their
families who have been shell-shocked at receiving a dire prognosis. They are seeking answers as to how they might cope. Clinton’s story will provide an example of how one young man and his family responded courageously to the challenge. n DS
Obtaining an MRI Excerpt from “Into the Light” Bronwyn Beattie wrote: “We waited all Friday night - we waited all Saturday, politely asking when Clint would be having his MRI. Finally we were told it was closed for the weekend and he would have to wait until Monday unless there was an emergency and the machine was turned on for an accident victim. By this time our anxiety was carrying over to Clinton who was now very much aware that his eyes were in a very bad way. Each change of staff saw doctors and nurses checking out his eyes and some of these people were not particularly subtle or considerate when it came to be sparing with ‘too much information’. I knew that Dr Stenning was phoning in wanting the MRI results but it just wasn’t happening. Monday came finally and we were ready at 7 a.m. in the morning to go up.” Bronwyn continues to explain that nothing happened all morning and it was lunchtime when she spoke to a staff member. “He was so rude to me that I just burst into tears. Over all the previous years I had never lost it in front of any of the medical staff. I just couldn’t believe that this one individual could be so uncaring and so cold. “When Clint finally went for the MRI he was too anxious to go into the machine. We had to give him Ventolin, so that he could breathe easier, and Valium. [Prior to this he had had at least 12 MRIs and had never had a problem.] “The results of the MRI were devastating. The tumour had grown and was causing havoc with his eyes...”
Yorkshire Three Peaks Challenge Brain Tumour Research and Support Across Yorkshire (formerly Andrea’s Gift) takes on the Yorkshire Three Peaks Challenge (UK) Carol Robertson of Brain Tumour Research and Support Across Yorkshire (formerly Andrea’s Gift) wrote to let us know that supporters of her organisation completed the Yorkshire Three Peaks Challenge and that a total of 864 miles (1,390 kilometres) was donated to the “Walk Around the World for Brain Tumours”. She wrote: “Saturday 2nd July saw 36 walkers set off at 0800 from the cafe at Horton in Ribblesdale to attempt the Yorkshire Three Peaks challenge - to cover 24 miles with 1,600 m (5,249 ft) of ascent and descent in under 12 hours. We were blessed with glorious weather which showcased the absolute beauty of the Yorkshire Dales and we had panoramic views to comfort us when the going was tough! It was very hot and there were a few burnt bodies by the end of the day. We began our trek at the smallest peak, Pen y Ghent (691m) which got the legs moving and hearts pumping! This was followed by around eight miles of flat boggy
moorland. There were hundreds of people trekking this day for a number of charities. Some unfortunate walkers ended up to their waists in bogs and had to be pulled out. Our trek followed up the long grind to the summit of Whernside, the highest peak at 728m. The descent is a killer for the knees and is equally as difficult as the ascent. Finally, we climbed our way to the top of Ingleborough at 723 m and the legs were stinging by this point. But there was a very sweet feeling at the top, knowing that it was all downhill from that point! All walkers who finished did so in under 12 hours. The fastest time was eight hours, 45 minutes.” Rosa Topley is a patient who gathered 25 friends and family to help her on the day. Team Topley was amazing. All got back within 12 hours and have raised over £4,000! Another patient, Jon O’Neil, and his son, Dan, also completed the course in under 12 hours. “A great day was had by all!” n
Above: Rosa Topley and Carol Robertson on
Above: Jon O’Neil, who also participated in
the top of Ingleborough Peak
the Yorkshire Three Peaks Challenge
Above: Teams of supporters turned up for the Yorkshire Three Peaks Challenge in aid of Brain Tumour Research and Support Across Yorkshire.
In her Mum’s shoes, as Katy “walked around the world” for brain tumours Originally from New Zealand, Katy Aramaki had always been interested in Japan. She eventually married a Japanese man, moved to Oita prefecture and learned a new way of life. Katy’s mother in New Zealand was diagnosed with a brain tumour at age 62. Here Katy tells the inspiring story of her Japanese rice paddies walk in her mother’s honour. Katy’s mileage was donated to the IBTA’s “Walk Around the World for Brain Tumours”.
IBTA: Please tell us a little about yourself. KA: My name is Katy Aramaki and I live in Oita prefecture in Japan. I am originally from Napier, New Zealand, which is where my parents were still living when they passed away last year. IBTA: Do you have a family? KA: Yes. I am married to a Japanese man and we have three children, ages five, four and two. Living so far away from Mum and Dad with three children has been a challenge. I’ve had to go back to New Zealand five times since Mum was diagnosed with a brain tumour in April 2010. It’s a long haul with small kids. IBTA: How did your mother’s diagnosis affect you and your family? KA: Ultimately it meant that my father, as the main caregiver, neglected his own health until it was too late (he was diagnosed with lung cancer). Mum was always so healthy and it was my father, who smoked heavily, who
Above: Katy Aramaki and her daughter with Katy’s mother. This photo was taken a few days before Katy’s Mum went into hospice for end-of-life care. Below: Katy inherited her Mum’s sneakers (running shoes) and wore them on her “Walking with Mum” initiative.
we thought would be the first to go. We thought we’d be chasing Mum around the neighborhood at 85 in her nightgown so it was very hard to lose her at only 62. I really had so much I needed to learn and advice to be gained from both of my parents and we all feel a bit ripped off. They didn’t even get the chance to enjoy their retirement. My children were too young to really understand what was going on although my son, now five, does mention Mum looking down on us sometimes. Kids are wonderful. They keep you grounded. My husband is Japanese and his culture isn’t used to huge outbursts of emotion so this has been a learning experience for him. He’s also getting used to the big international phone bill required for me to talk to my two sisters and brother. There’s only so much friends can do. They are great but they haven’t been through it like your own family has.
‘ IBTA: Having cared for someone you love who had a brain tumour, what were the particular challenges which you faced as a caregiver? KA: The hardest challenge was being so far away from where my Mum lived and not being able to just up and go home for months on end. The hardest thing about the brain tumour itself was losing Mum a little at a time. Some days I’d ring and just want to hear her voice but Dad thought it was better I didn’t because she was having a ‘bad day’. My dad was the primary caregiver. I helped as much as I could near the end when I was there but we had to get Mum into a care facility as she needed two people looking after her around the clock. Dad had advanced stage lung cancer at the time (although he didn’t get diagnosed until later) and it was all just too much. I think personal hygiene is one of the hardest challenges though. Mum would get ever so difficult about this and it took a real knack to try and help her. Dad knew exactly what to say and the tone in which to say it.
is meant to put out their flag by a certain time each morning and take it inside in the evenings. This indicates that all the people inside the house are well. I think it’s really for the old people who live alone, to let everyone else know they are still okay. IBTA: How many miles did you contribute to the “Walk Around the World for Brain Tumours” and how long did your “Walking with Mum” last? KA: In the end it was only 95.2 miles and I was really aiming for 100 but my Dad got diagnosed with advanced lung cancer at the start of September and the walking fell by the wayside. I tried to keep a journal of my walking, together with photographs I took along the way, at http://walkingwithmum.wordpress.com I started walking near the end of June 2010 and officially finished in mid October, although I like to think I will keep ‘Walking with Mum’ until her shoes are in tatters.
IBTA: What gave you the most satisfaction from your “Walking with Mum” project? KA: I told my Dad and he thought it was a great idea. I felt proud to be doing something that even, in a small way, might make a difference. I live very rurally and didn’t try to get local press or people to join me and that’s why I started the ‘Walking with Mum’ blog online. Knowing that people around the world were walking too was great. IBTA: As a family member of someone with a brain tumour, what would be the first three items on your wish list for brain tumour patients and caregivers? KA: Knowledge would be the first. I guess ignorance can be bliss but I would rather know what is coming. My dad was a doctor and this was both good and bad. He knew what was coming but Below: Katy and her baby “Walking with Mum”
IBTA: What led you to become involved in the Walk Around the World for Brain Tumours? KA: A random Google search on “brain tumours” led me to the IBTA website which is where I found the information about the Walk Around the World for Brain Tumours. I had just come back to Japan from New Zealand, spending time with Mum during her last few weeks and going to her funeral. As the only daughter with the same size shoes, I got Mum’s sneakers and walking in them for brain tumours seemed like an appropriate thing to do. I had Mum’s sneakers and I had a lot of rice paddies to walk around. I needed to get out into the fresh air. Mum loved walking and knowing that she had walked in these shoes before me spurred me on. Of course a lot of the time I had to wear dark “Jackie O” style glasses so people who passed by me as I walked for Mum wouldn’t know I had tears streaming down my face. My walk around the rice paddies took me past some interesting sights. In one neighbourhood, I passed houses with yellow flags in front. These flags are part of the “Yellow Flag Campaign”. Each house Brain Tumour
sometimes he wouldn’t let this filter down enough to us kids. Support would be the second. I had great ‘cyber’ support from people on the Internet and I think without it I would have been even more of a mess. I enjoy blogging and my cyber ‘Samurai Army’ has been a huge enveloping force of warmth and love over the hard times. Also, in Japanese culture friends or family make 1000 origami cranes for a sick loved one. I decided to embark on this and asked for help. Within days I had cranes coming from all over Japan and the world. It was truly amazing. These cranes ended up being placed in mum’s coffin to ‘help her fly’ to heaven, as I told my four year old at the time. Having a great care facility would also be on my wish list. My father promised my mother he would keep her at home for as long as he was physically able. And he did. He was amazing. We took Mum to a hospice for a ‘respite’ weekend but she was going downhill so fast we knew she wouldn’t be coming home. Our family wasn’t happy with the hospice. They didn’t seem to understand the level of care that Mum needed. They kept trying to give her a bell to press when she needed something, asking her what she wanted for lunch, if she wanted a shower. Mum was living ‘in the moment’ by then and all of this was useless. They asked us to move her because she was in a ‘respite’ bed only and they didn’t have any normal beds. We did move her to a fabulous rest home care facility unit where she passed away peacefully less than a week later. This facility made it a lot easier for us, the family, to deal with the situation. It was bright and sunny and the staff listened. This is where Dad chose to go and spend his last days only six months later, which was both horrible but also comforting at the same time. n Above right: A local shrine amongst the rice paddies on Katy’s walk. Right: Katy passed this scene on one of her walks. This house in Japan puts out a yellow flag each day to indicate that its inhabitants are well. This is part of a neighbourhood scheme.
Launch of new South American Glioma Network M
ost neurosurgeons and treating physicians would say that there have been few advances in the management of gliomas in the past 30 years. However, there has been an exciting breakthrough in treatment of sufferers of gliomas due to recent developments in brain surgery, basic science research, molecular biology, radiotherapy and chemotherapy. What does the future hold for the management of patients with a glioma? In South America the majority of patients with brain tumors are treated in isolated centers, very often without a correct diagnosis or not following accepted treatment protocols. The outcome of patients harboring low and high-grade gliomas is therefore in many cases poor. With the belief that only the cooperative efforts from many well-structured centers will be able to change the terrible prognosis of these patients, a multinational group called the “South American Glioma Network” (SAGN) was created.
This group has the following objectives: join the major neurosurgical centers in South America interested in the diagnosis, treatment and research of gliomas n develop a “homogeneous” South American glioma data bank n create “blinded centers” to analyse the data and conduct cooperative studies n organise treatment protocols n give support to patients and their families n organise scientific meetings and publish scientific papers with a large number of cases n cooperate with other glioma and brain tumor groups around the world The requirements to enter the SAGN are: at least 20 surgeries for gliomas carried out every year; the center shall have all the technologies needed for modern brain tumor surgery and have in place a multidisciplinary “brain tumor team” composed of neurosurgeons, neurologists, neuropathologists, neuroradiologists, oncologists, radiotherapists, nurses and psychologists. n
Below: members of the South American Glioma Network (SAGN). Upper row left to right: Ricardo Ramina MD, Mauricio Coelho Neto MD, Gustavo Sevlever MD, Apio Antunes MD, Carlos R Telles Ribeiro MD, Marcos Maldaun MD. Middle: Gustavo Isolan MD, Andrés Cervio MD, Santiago Condomi MD, Daniel Almeida MD, Julio Antico MD, Paulo H. Pires Agular MD, Henriques Balloni MD. Lower: Sérgio Ioshii MD,
The participating centers will collect data such as: clinical presentation, radiological features, surgical details, extent of resection, histological diagnosis, treatment protocols of radio and chemotherapy and outcome and send the information to reference centers. These “blinded reference centers” will analyze the data and forward them to a statistics center. All members of SAGN will have access to the information and will support the specific research projects from each center. Regular scientific meetings of the SAGN will be organized in different countries. The first meeting was held in Buenos Aires on March 9th, 2012. During this meeting treatment protocols and new ideas for this project were proposed. At the moment ten centers (six Brazilian, two Argentinian, one Chilean and one Colombian) will compose the South American Glioma Network. New centers fulfilling the participation requirements will be aggregated to the group. The approval of treatment protocols by this multinational group will help patients to receive adequate treatment from governmental health institutions and private insurance companies. n
Erasmo Barros Silva Jr MD, Alejandra Rabadan MD, Ronaldo Vosgerau MD, Jorge Mura MD, Jhony Camargo MD. For further information, please see www.inc-neuro.com.br
Editor’s Note: The IBTA believes that the emergence of a South American clinician-based professional organisation for gliomas is a tremendous development and patients will be the main beneficiaries. For some time we have been concerned at the absence of patient-initiated support groups for brain tumours in South America. Are there any readers who could help us with identifying and working with possible patient supporters and advocates from the densely populated cities in this area of the world? If so, please email: firstname.lastname@example.org
My wish for brain tumor patients in Finland: that each of them could have their own neurologist By Dr Merja Kallio, Helsinki University Hospital I am Merja Kallio, a Finnish neurologist. I have spent most of my life in Finland. I spent one year in Houston at MD Anderson doing a neuro-oncology clinical fellowship and I lived in the United States earlier as a child for eight months together with my family. My father was a researcher and my mother is a medical doctor. My father suggested medicine to me as I did not know what I wanted to do as an adult. He said there were a lot of choices about the kind of work doctors do. I have found that to be true. I tried some specialties as a resident but found that I liked neurology best. It also gave me the best opportunity to serve people with my talents. I also wanted to teach medical students and consequently had to write a thesis. My professor suggested brain tumors and I did a thesis in brain tumor epidemiology. That was the start. Then some brain tumor patients refused to change doctors in the clinic and sort of followed me. That was the start of the brain tumor polyclinic which I established in Helsinki and which has been growing in numbers through the years. In our Department of Neurology at Helsinki University Hospital, I run an outpatient clinic for about 350 brain tumor patients. After surgery, eventual radiation and/or chemotherapy the patients come to my clinic for follow-up. We give comprehensive care. My room is next to the social worker’s. The speech therapist, occupational therapists, physiotherapists and neuropsychologists work on the same corridor. I consult these specialists or refer the patients to see them for evaluations and rehabilitation as needed. Our social worker helps the patients - and me - to navigate through our complicated social security system. 54
Above: Dr Merja Kallio (left) and Denis Strangman (Chair IBTA) in front of the IBTA/JBTA display stand at the WFNO conference, Yokohama, Japan, 2009.
Investing time to better inform patients is important I spend a lot of time discussing neurological symptoms and neurocognitive problems with the patients. To help my patients understand higher cerebral functions or mental activities I explain to them that three functional units can be distinguished in the brain, consisting of interrelated networks: 1. We talk about tiredness and lesions in the vigilance upholding system which is the system regulating tone and wakefulness of the brain. The main part of this system is the reticular activating system, i.e. the connections mainly in the brainstem and deep parts of the brain. 2. We discuss the information gathering, processing and storing systems which are mainly concentrated in the brain’s parietal, temporal and occipital lobes. 3. We also talk about activity programming, regulating and the verifying system in the brain which is also called the executive system. This system is concentrated in the frontal lobes. It’s worth noting, though, that none
of these functional networks are strictly localized. Few patients seem to have been given an explanation of these cerebral functions and systems and I think it’s very important to explain the bigger, overall picture to them. It gives patients a greater understanding of what they are dealing with and why they may be having certain problems. As part of therapy for a brain tumor, we try to treat these challenging neurological symptoms and neuro-cognitive problems which include difficulties in initiating, organizing and monitoring activities as the patients have a lot of executive function problems. Sometimes there are also problems with speech, vision, hearing and memory to be dealt with. We also look at the MRI scans and take care of the epilepsy, headaches, etc. If the tumor changes on MRI, we consult our weekly multidisciplinary team for treatment plans. I am part of the team together with the neurosurgeons, oncologists, neuroradiologists and neuropathologists. I find the work fascinating and very challenging. I am learning new things all the time. The patient contacts are very rewarding. More challenges Very unfortunately, we are facing budget cuts which mean less visits for patients and less time for dealing with the myriad of neurological symptoms the patients have. I wish all the brain tumor patients in Finland could have their own neurologist who would be knowledgeable, particularly about neuro-cognition and tumors. This neurologist would need to be part of an experienced multidisciplinary team. Consequently all the patients would then have both excellent tumor and symptom treatment.
There are some small support groups for brain tumor patients in Finland under the wing of our Finnish Cancer Organization. However, running these groups only by themselves often puts an undue burden on the patients who may already be struggling with the challenges of their disease. The effort that the patients put into these support groups is truly inspirational and takes tremendous energy on their part. Ideally, it would be good to
have others involved in the running of these groups alongside the patients so that the workload is spread and the patients have some additional support for their important work in helping each other. Perhaps the Finnish Cancer Organization could assist more in this area of support for brain tumor patients. There are thousands of people in Finland who have a brain tumor. I hope that we here in Finland can
cooperate more internationally both in research and care for the benefit of brain tumor patients. I cope with the emotional burden of the clinic by discussing the issues with our excellent co-workers including nurses and particularly the neuropsychologists. My Christian faith is crucial for my coping. I relax with my friends, I enjoy the outdoors and gardening, and during the warmer season, I bicycle to work. n
In the 2011 issue of â&#x20AC;&#x153;Brain Tumourâ&#x20AC;? magazine we reproduced an article from the New Zealand media about the heroic efforts of pathologist Dr David Roche to rescue tissue samples (including brain tumour samples) from his laboratory which had been wrecked by the Christchurch earthquake. He retrieved the samples and was able to complete his analysis. We alerted an Australian pathologist to the story and he was able to convey our magazine article to the Royal College of Pathologists in Australia who have also reported the story in their on-line news bulletin. n Reprinted with kind permission of the Royal College of Pathologists of Australasia, http://epathway.rcpa.edu.au/index.html
A UK campaign to speed up diagnosis of brain tumour in children By Professor David Walker Children’s Brain Tumour Research Centre, University of Nottingham, United Kingdom
s a paediatric neuro-oncologist who has been treating children and young people with brain tumour for many years, I have repeatedly met children and their families expressing surprise and concern about the length of time it took for the different partners in the health system to diagnose their brain tumour. For some, the process takes a few days of headaches, vomiting and unsteadiness, before a brain scan is ordered. For others, the story of fluctuating symptoms, some of which are not obviously neurological, spans months and on occasions, years. The shock of being told that you or your child has a brain tumour which will need immediate treatment and threaten life or result in disability is profound. It makes many people want to either “wind the clock back” to an earlier consultation where they could have asked for a referral or a scan, or they get upset and “whistleblow” within their health system to say that their experience of delay is unacceptable and should not happen to others. Examples of young people’s descriptions of such experiences can be seen at the JimmyteensTV website: http://jimmyteens.tv/ channel/headspace/ HEADSMART is launched in the UK As a result of hearing these concerns we, at the Children’s Brain Tumour Research Centre at the University of Nottingham, initiated a research programme aimed at seeing just how long it takes to diagnose a brain tumour in childhood. We identified research articles from around the world and analysed the results. We then looked at government recommendations on how patients with symptoms of brain tumour should be 56
Above: Professor David Walker with Glenis Willmott, Member of the European Parliament at the launch of the pan-European HeadSmart campaign in the European Parliament in February 2012 (see http:// www.siope.eu/SIOPE-EU/English/SIOPE-EU/Advocacy-Activities/HeadSmart-Child-Brain-Tumour-AwarenessInitiative/page.aspx/272). Photograph by: HISPA Photography and SIOP Europe
diagnosed and then consulted with over 150 doctors who had been involved in making a diagnosis of brain tumour and asked them how they would recommend that it was done better and faster in the future. This work resulted in some research reports being published and more importantly, we wrote a detailed document describing how children (under 18 years) present with brain tumour and how they should be assessed and investigated and, most importantly, how fast that should be done. This guideline was published by the Royal College of Paediatrics and Child Health in 2007. Having published this work we were encouraged to develop a public and professional awareness campaign as we were advised that our work would make little difference if no one talked about the problem.
It was this advice that gave rise to the “HEADSMART - be brain tumour aware” campaign which was launched in the UK on Wednesday 8th June 2011. Its aim is to: n increase the public’s and professionals’ awareness of brain tumour symptoms n promote a fast strategy for selecting patients who need a scan n recommend situations where a child should be reviewed within a short time and, n most importantly, identify when a child and their family can be reassured that they don’t have a brain tumour and can go home with no worries about that possibility. By initiating this campaign we aim to reduce the median interval from symptom onset to diagnosis from the current level in the UK of three months to one month - the best reported result in the medical literature. If we are successful in this, we hope that
5 - 11
Preschool Brain tumours happen... Symptoms include:
12 - 18
Young People Brain tumours happen... Symptoms include:
Brain tumours happen... Symptoms include:
Persistent / recurrent vomiting
Persistent / recurrent headache
Persistent / recurrent headache
Balance / co-ordination / walking problems
Persistent / recurrent vomiting
Persistent / recurrent vomiting
Balance / co-ordination / walking problems
Balance / co-ordination / walking problems
Abnormal eye movements
Abnormal eye movements
Blurred or double vision
Blurred or double vision
Fits or seizures
Fits or seizures
Abnormal eye movements Behaviour change, particularly lethargy Fits or seizures (not with a fever) Abnormal head position such as wry neck, head tilt or stiff neck
Abnormal head position such as wry neck, head tilt or stiff neck If your child has one of these, see your doctor If two or more, ask for an “urgent referral”
If your child has one of these, see your doctor If two or more, ask for an “urgent referral”
Delayed or arrested puberty, slow growth If your child has one of these, see your doctor If two or more, ask for an “urgent referral” Especially if growth or puberty is slow
Above: HEADSMART symptom card
we will reduce the risk of death and disability, linked to delays in diagnosis. A learning experience In seeking to achieve this target we engaged the support of neuro-oncologists working across the UK and asked them to report the interval from symptom onset to diagnosis for each patient as the months went by. By the end of 2011 we had information from over 70% of cases who had presented. By comparing previously published work to the first half and second half of 2011 we can say that there is a trend of shortening symptom interval which, if sustained and demonstrated to correlate with other methods of measurement, will be evidence of the effect of the HEADSMART campaign. This campaign has been a learning experience as it has been dependant upon a successful collaboration between three diverse organisations keen to tackle the issue of brain tumour awareness and advise healthcare professionals how to identify, assess and investigate possible brain tumour symptoms in children and teenagers. The Royal College of Paediatrics and Child Health, the Samantha Dickson Brain Tumour Trust and the Children’s Brain Tumour Research Centre have worked together, with help from the Health Foundation who have funded and advised on the project. So far we have been able to show that: n The website was launched in June 2011 and has received highly rated feedback and is integrated with UK National Health Service (NHS) and related heath information
websites. The website’s reassuring qualities dominate feedback. n The media campaign was estimated to have reached 8 million people in June 2011 n 60% of healthcare professionals (paediatricians 71%, emergency medicine 13% and GPs 15%), whom we surveyed nationally during Autumn 2011 had heard of HEADSMART. Most had heard of it through professional networks and meetings, posters, leaflets and through discussion. n Awareness amongst general practitioners and paediatricians was high for most key brain tumour symptoms prior to the campaign’s launch, however awareness of the rarer key symptoms by both groups was enhanced. n The proportion of paediatricians being confident to diagnose a brain tumour in childhood rose from 32% to 55% after the campaign launch. n Only 10% of GPs felt confident to diagnose a brain tumour in childhood. This did not change after the campaign launch. n There remains a low public awareness of the rarer key symptoms such as abnormal head position, lethargy, excessive thirst and polyuria (the passage of large volumes of urine with an increase in urinary frequency). What next for HEADSMART? We are now recruiting HEADSMART Community Champions and Volunteers to promote community based dissemination of the HEADSMART materials and messages. We anticipate professional and public awareness to rise further during the second year of the campaign. HEADSMART is proposed to be
extended by a partnership campaign between parents and professionals to European countries following discussions in the European Parliament in 2011 and 2012, and a proposal announced on Rare Disease Day on 29th February 2012. This was an unexpected result of the campaign and may lead to a multinational initiative to speed up brain tumour and other cancer diagnoses in children. The first year of our campaign is now complete. We are planning further engagements with the profession, dissemination of leaflets to the public and will continue to evaluate the impact of the campaign upon public and professional awareness. We are focussing upon measuring the symptom interval of each patient as they are diagnosed and most importantly seeking to include this data item as an essential routine parameter of measuring health service quality through cancer registration. We are excited that the campaign has been well received, has not caused panic, is being noticed and may be influencing the pace of diagnosis in the UK’s complex health system. We are planning epidemiological assessment of the true impact of the campaign upon symptom interval, referral pathways and health service usage as well as on survival and disability rates. We set off to improve the public’s perception of the health system because of their concerns. We hope that we will be able to demonstrate that the HEADSMART campaign has saved lives and reduced disability. However it is too soon to tell. n
For further information about the “HEADSMART - be brain tumour aware” campaign, see www. headsmart.org.uk For the full report on diagnosis of brain tumours in children and young people (The Brain Pathways Guideline: A Guideline to Assist Healthcare Professionals in the Assessment of Children who may have a brain tumour) see: http://www.rcpch. ac.uk/sites/default/files/Diagnosis%20 of%20Brain%20Tumours%20in%20 Children%20Guideline%20-%20 Full%20report.pdf
Caregiver burden in relation to a brain tumour diagnosis By Dr Martin Klein, Associate Professor Medical Neuropsychology, Department of Medical Psychology, VU University Medical Center, Amsterdam, The Netherlands
rimary brain tumours, as opposed to most other types of cancer not involving the central nervous system, have a direct effect on brain functioning. Brain tumour patients often suffer from neurological deficits, headaches, seizures, and fatigue. In addition, they may be confronted with significant changes in their cognitive functioning, mood, and personality. As a result, these patients tend to be more dependent on relatives than patients with other types of cancer. In most cases, the partner is the person most involved and thus becomes the primary informal caregiver. In response to this new role and the devastating diagnosis of their loved one, caregivers of brain tumour patients experience considerable stress and caregiver burden negatively affecting their own quality of life. Additionally, quality of life of caregivers is furthermore affected by quality of life of the patient, tumour grade, and by neurological and neuropsychiatric symptoms experienced by the brain tumour patient, e.g. dysphoria (a state of unease or mental discomfort), depression, and irritability. Caregivers of those with more malignant brain tumours particularly may face stressful demands, due to the behavioural problems associated with the cognitive deficits that may already be present early in the disease trajectory. These demands might be even enhanced by the recent trend to shift health care from the hospital to the home setting. As the brain tumour patient’s behaviour becomes more problematic in the course of the disease, reductions in perceived caregiver mastery (i.e. the combined effects of the caregiver’s self-perception and actual ability to successfully perform the activities of providing care) may also negatively affect the caregiver’s quality of life. 58
Above: Dr Martin Klein who says: “...caregivers can benefit greatly from structured psychosocial interventions, leading to clinically significant improvements in the caregiver’s quality
function in their community setting and keep brain tumour patients at home for as long as safely possible. Although it is recognized that caregiving has negative mental and physical sequelae, surprisingly few rigorous studies of supportive care interventions have been performed in caregivers of brain tumour patients. Research to date indicates that, while continuing to face significant caregiving stress, caregivers can benefit greatly from structured psychosocial interventions, leading to clinically significant improvements in the caregiver’s quality of life. Interventions based on this approach have been developed for caregivers to patients with cancer, but hardly any for those taking care of brain tumour patients.
Caregivers’ quality of life - room for improvement Although many caregivers enjoy a profound sense of privilege and may derive deep satisfaction in this role, sadness, guilt, anger, resentment, and a sense of inadequacy are also common and understandable reactions. Exhaustion, financial strain, disrupted daily activities, and continuous caregiving contribute to significant caregiver’s mental health morbidity, including anxiety and depression. Caregiving is not only associated with poor sleep but half of all caregivers experience clinical depression, with intense caregivers (those providing at least 21 hours of care per week) having the highest incidence (61%) of depressed mood. Identification of factors leading to distress in caregivers may provide avenues for intervention that will help both the caregiver and the patient so that caregivers can
Useful approaches to help caregivers cope A number of approaches might be particularly useful in helping caregivers to cope more effectively with their role. First, through education the following types of information may be given to caregivers: information on (a) brain tumours - causes, characteristics, trajectory, common care demands and challenges; (b) available services and resources; (c) opportunities for caregiver self-care; (d) typical effects of caregiving on the broader family system; and (e) what to expect from care/support systems, including healthcare, social services, and housing. Second, participating in caregiver support groups may yield high levels of caregiver satisfaction by participants, but at the same time have a relatively weak impact on caregiver depressive symptoms and burden. Participating in support groups may also have a number of other disadvantages: the caregiver might find it difficult to leave
the care recipient making consistent group attendance difficult. Transportation costs with great distance or minimal public transportation might strain the limited financial resources of the caregiver. Also, the lack of commonality in health conditions of care recipients, e.g. more malignant versus less malignant tumours and upsetting stories of late-stage or end-of-life caregiving, may also limit the benefits for individual caregivers. A partial solution is the use of so-called E-Communities by which caregivers are connected to their peers in their own cities and states over the Internet. A good example is the US-based National Family Caregivers Association (http://www. nfcacares.org/). Third, individual interventions consisting of one-to-one meetings between a clinician and primary caregiver targeting symptomatology in caregivers appear to be more effective in treating depression than group sessions. Caregivers are trained in getting skills related to managing caregiver problems, such as disruptive behaviours with severe cognitive deficits. Tools for building coping and problemsolving skills The goals of these interventions in general are building coping and problem-solving skills; increasing the rate of pleasant activity for the caregiver and/or patient; and reducing stress through environmental modification. Individual Interventions that might potentially be relevant for caregivers of brain tumour patients have been developed for n dementia (e.g. Star-Caregivers - STAR-C, see www.rosalynncarter.org/caregiver_ intervention_database/dimentia/star-c_ intervention/) n Alzheimer’s (e.g. Resources for Enhancing Alzheimer’s Caregiver Health - REACH, see http://www.ninr.nih.gov/ ResearchAndFunding/REACH.htm) n chronic illness (e.g. Creativity, Optimism, Planning and Expert Information - COPE, see http://www.apa.org/pi/about/ publications/caregivers/practice-settings/ intervention/cope.aspx) n patients with physical disabilities (e.g. Facts, Optimism, Cope, Understanding, Solve - FOCUS, see http://www.apa.org/
pi/about/publications/caregivers/practicesettings/intervention/focus.aspx) Recently, in our center in Amsterdam, we started studying the effects of treatment of depression in brain tumour patients over the Internet and this approach may also work for their caregivers. Other ways of improving caregiver burden Internet-administered therapy is a promising new way to deliver psychological treatment. There are an increasing number of studies in various fields such as depression, anxiety disorders, mood disorders and health conditions like headache and insomnia. Among the advantages is the dissemination of the treatment, being able to access treatment from a distance, and possibilities to tailor the interventions to individual needs. Finally, instead of addressing the sole
Along the Atlantic coast of France with GFME
Above: Supporters of Glioblastome Association Michèle Esnault (GFME) in France participating in the “Atlantic Sunday” on 6th November 2011.
NINETY-EIGHT walkers took part in the 5th Glioblastome Association Michèle Esnault (GFME) “Atlantic Sunday” event to raise awareness of the challenges of brain tumours and to collect mileage for the International Brain Tumour Alliance’s 2011 “Walk Around the World for Brain Tumours”. As well as accumulating 686 kilometres for the IBTA’s World Walk, the event also raised �700 for brain tumour research. These funds were donated to the Association pour la
primary caregiver, family interventions might be effective. These kinds of interventions usually aim at improving outcomes for the brain tumour patient by improving family engagement and effectiveness in handling the challenges associated with the tumour and also aim at improving the well-being of the caregiver and reducing stress and negative outcomes of caregiving. Examples of this approach potentially relevant for caregivers of brain tumour patients are abundant in dementia care (e.g. Resources for Enhancing Alzheimer’s Caregiver Health - REACH (see http://www. ninr.nih.gov/ResearchAndFunding/REACH. htm - Miami Site) and New York University Caregiver Intervention - NYUCI (see http:// nrepp.samhsa.gov/ViewIntervention. aspx?id=74). n
Recherche sur les Tumeurs Cérébrales (ARTC) in Paris. The seven kilometre walk was organised by Marie Tournaire and her children Manon, Anna and Julian. Despite some rain, everyone enjoyed themselves. At the end of the walk, a delicious buffet awaited and participants could listen to three musicians playing songs. This fifth walk emphasised solidarity as people from the different generations all came together to highlight the brain tumour journey. The walk started at the beach of Saint Palais and finished at the port of La Palmyre (Charente Maritime) near a bicycle shop called Cyclo Trott. Everyone is already looking forward to the next GFME Atlantic coast walk in November 2012. Thank you to all the participants! n
Above: The GFME “Atlantic Sunday” walk attracted young people too
Keeping a positive outlook on life and raising much-needed funds for brain tumour research An interview with Wendy Fulcher, Chair of Brain Tumour Research, United Kingdom IBTA: What is your current position in the brain tumour movement? WF: I am a founding trustee of the Brain Tumour Research Campaign, a charity that I co-founded in 2003 with Kevin O’Neill, Consultant Neurosurgeon at Charing Cross Hospital in West London. I also chair the umbrella group of 18 brain tumour charities called Brain Tumour Research. IBTA: What led you to become involved in this arena? WF: My husband, John, died from a brain tumour (grade 4 astrocytoma/glioblastoma multiforme) in 2001. It was in talking to his neurosurgeon during his illness and after his death that I learned how little is known about brain tumours and how little money goes towards research into their causes and treatments. My husband and I ran an eventorganising business and I realised that I was in a position to be able to organise fundraising events through our company (which I still own). I also needed another purpose in my life after John’s death. IBTA: How do you cope with the pressures that develop in this work? WF: By keeping a positive outlook on life and recognising that whatever I am doing is a step, however small, in the right direction. Having experienced firsthand the desperate plight that brain tumour sufferers and their families and friends go through, how could I not be committed to doing whatever I can to help the cause? I have learned to accept my limitations as a volunteer, as well as develop enormous patience, recognising that things don’t happen as quickly as I would like. Working closely with researchers and clinicians, I am constantly inspired by their commitment and dedication, which lifts me in my “darker” moments. Seeing how I can help them (not just with raising funds but also with my “lay” viewpoint and business skills) keeps me positive. 60
of the desperate need for significant funding; the poor career path in the neuro-oncology field, both clinically and academically, which has discouraged scientists and clinicians from pursuing research opportunities and has limited the number of grants made available by the larger national grant bodies such as the Medical Research Council (MRC) and Cancer Research UK; the lack of joined-up thinking in the research field.
Above: Wendy Fulcher, Chair of the Brain Tumour Research group of 18 UK brain tumour charities, and founding trustee of the Brain Tumour Research Campaign
IBTA: How do you relax? Do you have a hobby or a sport with which you are involved? WF: I love pottering in my tiny garden. I also enjoy walking, knitting and cuddling my two cats. IBTA: What gives you the most satisfaction from your work? WF: Seeing the difference that our funds have made to the Neuro-oncology Department at Charing Cross Hospital; seeing the brain tumour community as a whole come together and begin to work in a united way instead of in isolation as they did a few years ago; seeing how our supporters gain satisfaction or solace from helping our cause – not only has it given me a purpose but it also gives them an outlet for their grief, frustration or gratitude. IBTA: What are some of the challenges facing fundraising for brain tumour research? WF: The lack of awareness and recognition
IBTA: What would your advice be to a brain tumour group just starting out on the research funding road? WF: There are lots of small charities that raise small amounts of money and you need to think carefully about what you want to achieve with your fundraising, since significant funds are needed to make a major difference to outcomes. While undoubtedly every little helps, make sure you know where you want your money to go. While the temptation may be to give money to the larger cancer charities, it is unlikely that your money will go directly to brain tumour research. It will most likely go to general cancer research which usually has little relevance to brain tumours. At the other end of the scale though, a few hundred or thousand pounds won’t go far in isolation, so better to join forces with another charitable group with similar purposes or (as in my case) an academic institution where your seedfunding will help to influence the growth of a specialised centre of excellence. IBTA: What would be the first three items on your wish list for brain tumour patients? WF: (1) a better choice of treatments and/ or clinical trials; (2) greater recognition of the desperate lack of understanding of their disease and a high-profile campaign to drive significant funding at every level to support research; and (3) a cure! n
Towards achieving our goals By Bitten Næsted President of the Danish Brain Tumour Association IN April 2011 we established the Danish Brain Tumour Network. Shortly after that we defined the purpose Above: Bitten Næsted, of the network’s President of the Danish future work. One Brain Tumour Association of our goals was to create the possibility for patients and relatives to meet and share knowledge, experiences and to support one another. We are happy to say that in the last 11 months we have had around ten such meetings in Denmark. We have three local groups in Jutland. This is the large peninsula stretching towards Scandinavia and the part of our country which is connected to Europe. People sometimes define this area as “mainland Denmark”. Jutland has a population of 2.5 million people. One of the groups in Jutland is for relatives and the other one is for patients and relatives. Both groups meet once a month and discuss subjects that absorb/ interest them. All of us who are active in the network have had or still have a brain tumour close to our lives. We know,
therefore, that it is important for us to create our own website where people can find relevant articles etc. about the illness that affects them. So when our website was ready to “go live” we were very pleased. Today it is our most important communication platform. You can find us on www.hjernetumornet.dk The network has around 260 members. Our network is for patients, relatives and others who have an interest in helping the network to achieve its purpose. We have several doctors, nurses, physiotherapists and scientists as our members. On 24th April 2012 we held the second National Brain Tumour Day in Copenhagen. We collaborated with doctors, nurses and the pharmaceutical company Roche to establish this day. The day is for patients, relatives, professionals, politicians and journalists. More than 400 people signed up to be part of this day. Lots of very good things have happened during the year that the network has been in existence. Therefore we have taken a
Above: Brain Tumour Day 2012 in Copenhagen - a full house. Over 400 people attended this event.
new step of becoming an incorporated organisation on 24th April 2012 called Hjernetumor Foreningen. n Below: IBTA Co-Director Kathy Oliver at the IBTA’s display in Copenhagen for the Brain Tumour Day 2012 conference. The large poster on the table is an enlarged version of the Brain Tumour Timeline which appears in this magazine.
Left: Left to right: Hjernetumor Foreningen Committee Member Karen Risgaard, President Bitten Naested, Denis Strangman (Chair, IBTA) and Kathy Oliver (Co-Director, IBTA) at the Danish Brain Tumour Association’s annual Brain Tumour Day meeting in April 2012.
I’m fascinated with the workings of the human brain By Gerardo D Legaspi, MD Associate Professor, University of the Philippines, College of Medicine, Philippine General Hospital, and President of the Association of South East Asian Nations (ASEAN) Neurosurgical Society (2011-2013) and the Academy of Filipino Neurosurgeons (2011-2012)
was born and raised in Manila, the capital city of the Philippines. I grew up in a neighborhood which was a relocation site for squatters in the city and which eventually evolved to be a subdivision. I was educated in a Catholic school (La Salle) and later on at the University of the Philippines. So my growing-up years exposed me to toughies in the neighborhood as well as men of God. My parents raised us with disciplinarian principles, all five boys and one sister. I had no medical exposure at all in the family. No one was involved in the health industry. I was the first one in my family to enter the profession of medicine. It may sound like a cliché, but the idea of being helpful to others - maybe in a dramatic, St-Elsewhere-TV-series-kindof-way - got me interested in medicine. I knew I wanted to be a neurosurgeon even in my second year of high school, especially after watching a pituitary case treated with Gamma Knife in the 1970s on a Scientific American TV special. Neurosurgery...a natural career choice My fascination with the workings of the human brain, combined with my awe for the dramatic results that a surgical intervention can produce, naturally led me to neurosurgery as a career choice. Initially I concentrated mainly on cerebrovascular surgery, doing my research and Master’s degree in Thailand under the auspices of Paris Sud University (under Professor Pierre Lasjaunais). The sheer volume of patients needing good care for their brain tumors eventually made me gravitate to this field. I can see
Above: Gerardo Legaspi participated in last year’s Ironman race in the Philippines where the Academy of Filipino Neurosurgeons fielded a relay team. Dr Legaspi competed in the cycling leg of this gruelling competition.
now the potential to optimize comfort and function preservation, as well as the importance of a minimally invasive way of taking out these lesions effectively. I am always motivated by the fact that no two tumors are alike and that each patient requires a unique understanding and planning. There are two sources of strength for me on a day to day basis: my family and my patients. I believe that if everything is in order with your family, a lot of the emotional stresses become so easy to handle. When we say “family” here in the Philippines this means not only my wife and children but parents, siblings, cousins and even distant relatives! The psychological stress from dealing with dreaded diseases and potentially complicated procedures is eased by the
feeling of trust that you get from patients after discussing their conditions with them. My confidence is enhanced by the knowledge that they have understood things, and that after weighing-up the options and seeking other opinions, they decide to have the treatment with me. People are always curious to know what a neurosurgeon does to relax. “Work hard play hard” is my motto. Always in search of that perfect work/life balance, I play the sax, flute and guitar, occasionally with a band. Jazz is my genre. I actively do road and mountain biking three days a week, and compete in weekend races. I also run. Fixing up my garden is also one way of unwinding. On weekends, I drive an hour away from the city to a farm where we plant mangoes and rice. Often though, just chilling out with my family at home, especially around dinner time, is enough to “unsnag” me for the day. Challenges of the healthcare system in the Philippines The healthcare system in our country is generally still based on the “fee for service” model. A small number of our patients have private medical insurance which is usually inadequate to cover the whole treatment for most brain tumor cases. Seventy per cent of our people rely on government services for their health needs and at most the government can only support 30% of their treatment. So it is the inability to provide ideal treatment, as per current standards, that is the biggest challenge in the treatment of brain tumors in our country. Often
we can do the surgical intervention that is needed, but the resources of families are not enough for us to proceed with chemotherapy or radiotherapy. In fact the biggest government facility - which handles close to 500 tumor cases a year - only has a cobalt radiotherapy machine instead of anything more high tech. A lot of our patients also come with already huge tumors because of delay in diagnosis and sometimes ignorance on the part of the patient’s family and even the doctors who first see them. It’s important to note that the Filipino family, including its extensions, is a closely knit one. It is heartening to see relatives doing their share to help the patient who is in need. Those who cannot give monetary support offer to stay with the patient in the hospital and do the menial job of caring for him/her. Relatives from abroad send money for the expenses. Prayer brigades are formed to “storm the gates of heaven for a miracle”. Hospital bedsides are literally packed with well-wishers who keep the patient’s spirits propped up, buoyed by the idea that he or she is not alone in their misery. Seeing this in private patients is commendable, but seeing it in charity patients makes it truly inspiring. Of course kind words from patients themselves, coupled with their true grit and determination to beat the disease, makes all the effort worth it. My wish list for brain tumor patients As for my wish list for brain tumor patients, current neurosurgery practice in the Philippines is still 95% general neurosurgery. It is common that patients with brain tumors needing specialized or even multidisciplinary care end up with generalists who may not be familiar with the latest standards in the treatment of such conditions. I would like to see a more organized handling of our brain tumor patients, both in the private and public sectors, by creating centers of excellence in major regions of the country. There is also very little research that is generated because of the “diffuse” care of these patients. They are so spread apart in the country that data collation is staggeringly challenging.
I would also like to see a government facility that will give, either for free or at much reduced cost, radiotherapeutic treatment to charity patients comparable to those seen in private institutions. To give an example, Gamma Knife or X-Knife radiosurgery costs around USD $12,000 here in the Philippines. Intensitymodulated radiation therapy (IMRT) costs around USD $5,000. None of these treatment modalities are available in government institutions. My personal dream is to see cutting edge treatment available to those patients who don’t have the resources for it and who unfortunately comprise a great majority of the patient load that we have. What does the future hold? As for the future, I anticipate breakthroughs in diagnosis, treatment and monitoring of results. I think that routine histopathology will become inadequate for clinical judgements. Immunohistochemical studies may give more accurate diagnosis in terms of subtypes of biological activity of the same
type of tumor seen in different individuals. This way therapy becomes even more specific and “tailor fit” for a patient. There will be an advent of newer chemotherapeutic agents acting on recently discovered processes in the tumor cells. I am also looking at stem cell therapy as a very promising option, but it still needs a lot of investigation. I would like to congratulate the International Brain Tumour Alliance (IBTA) for providing a vehicle for patients and health care providers to interact and share their experiences. It is my belief that more and more, each country or region has its unique needs and style of treating brain tumors. For us here in Asia, it is possible that some Western standards may not truly be possible due to regional and racial factors. The IBTA magazine provides us with a broader perspective, both on the scientific and more personal side, to help handle this dreadful condition. I am also happy to note that through the IBTA our patients get information about the “cutting edge” options which are not yet available in the Philippines. n
Brain tumour awareness raising event in Del hi, India Dr P K Sachdeva, Senior Consultant Neurosurgeon wrote to us from Delhi, India to say that he had organised an activity on 30th October 2011 for the International Brain Tumour Awareness Week. He said: “I wish to inform you that I organised a free brain tumor patients’ camp where my team members and I examined all the patients and provided them with all necessary investigations. A team of doctors delivered a talk regarding brain tumor awareness, signs and symptoms, and explained all possible treatment modalities. This time the basic theme of the talk was on post treatment quality of life. We had a very long question and answer session with patients and the general public This talk was attended by a large
number of people. Overall, it was a very successful programme. n
Facilitating support groups for brain tumour patients By Moira Dennison Head of Support and Information Services, Brain Tumour UK
’ve worked in charities for the last 27 years. I started out in press and campaigns working with people with physical disabilities then moved on to campaigning, service and organizational development within the learning disability field. In 2002 I went to a national breast cancer charity where I headed up a region covering half the UK. Then I ran a small charity in the Thames Valley providing befriending, advocacy and counseling for people with life limiting and terminal diagnoses. When I came to Brain Tumour UK I reduced my weekly commute by 550 miles! My role at Brain Tumour UK is to ensure that anyone affected by a brain tumour can access our range of support and information services. I lead on the strategic development of our services across the UK. From our office the support and information services team run the helpline, the phone groups, the online and text services, administer the Denny Care & Relief Fund, moderate our web services and develop our information resources to the UK’s Department of Health Information Standard. On the ground I have Development Coordinators who roll out the operational plan and take the lead role in developing the network of support groups. We run a variety of support group meetings. Firstly there are the face to face group meetings. We also run monthly phone group support meetings and later in the year we’re planning to provide a weekly online support group in partnership with another charity. The face to face groups usually meet monthly and we try and set the dates, speakers and topics in advance for the 64
Above: Moira Dennison, Head of Support and Information Services at Brain Tumour UK, says that the key attribute for a support group facilitator is to be an excellent communicator.
year. Where possible we get the local clinical nurse specialist to come to the group’s meetings as well. We run many groups in partnership with other charities. This underlines our belief in the importance of collaboration between organisations working in the area in order that the best support possible is made available to patients and others. The sessions are structured so that there is always time to share and get support within the group. You don’t have to ‘join’ a group - everyone is welcome. If people can’t attend we do find they appreciate getting feedback from the meetings so they can still feel involved. Groups do vary greatly in terms of the proportion of carers to patients. It really is for the group itself to decide - nothing is set in stone. Where we do have a mix of people attending, we are able to split the group for some of the time and then bring everyone together again at the end of the meeting. The important thing is how the
facilitator manages the dynamic of the group. Facilitators certainly need group work experience and a background in counseling can help. They have to be excellent communicators (perhaps the key attribute needed by a facilitator), be really good at working in a group dynamic and dealing with people in crisis. They have to be aware of boundary and confidentiality issues. As to integrating new people into the groups and their reaction to other members who might be at a more advanced stage of their disease, if someone has made contact with a member of Brain Tumour UK staff ahead of attending a group, then they will be given information and we can brief the facilitator. If someone turns up on the day, then the facilitator will take time to speak to them and after the group is over give them the information about ground rules and confidentiality and follow up any issues that may have arisen for them. We find that people who participate in the group tend to identify with people who have the same tumour type but there is always a lot of common ground. Our experience is that group members are usually interested in learning and understanding other tumour types. The success of the group is really down to the dynamic and how it is facilitated rather than the prognosis of those who attend. As far as the most challenging moment we’ve had in providing support and information to brain tumour patients, I asked my team this and the same answer came back from all of them - in a group setting, how to handle the news of a death. Clearly, facilitators will be briefed beforehand. There needs to be space to
reflect and provide support to people who may be feeling very vulnerable. For anyone starting a brain tumour support group, it’s really important to do the groundwork before launching a group. There are also infrastructure elements that are vital to have in place. The group has to be sustainable and that is addressed in our operational plan which identifies the budget and other resource allocations. You need contingency plans and you need to do a comprehensive risk analysis. Get the support and involvement of the local health care professionals especially the clinical nurse specialists and any other like-minded charities. Do some market research to find out what prospective group attendees want in terms of venue and timing. Use this to plan the meetings well in advance and agree the marketing strategy. And very importantly, get the word out there that you can offer a support group to patients! n
DR Anita Bergout (who has a brain tumour and is holding the sign), her husband Bob (on her right) and their friends, after they walked to Mount Kosciuszko, the highest point in Australia in January 2012 and donated their mileage from the walk to the IBTA’s “Walk Around the World for Brain Tumours”. n
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Can we learn from our canine friends? Dr Stephen A Fletcher is Associate Professor and Chief, Division of Pediatric Neurosurgery, Department of Pediatric Surgery of The University of Texas Medical School at Houston. Since the incidence of spontaneous brain tumors in canines is approximately five times that of humans , Dr Fletcher proposes that this provides a rich, under-utilized, patient population for comparative studies with human brain tumors. If that assumption is proven true, the potential for development of new treatment protocols in humans may be enhanced. Above: Dr Stephen A Fletcher - exploring a canine
IBTA: Where did you spend your childhood? SAF: I was born in Paducah, Kentucky but pretty much grew up in Ft. Worth, Texas. IBTA: Did you come from a family environment that had a connection with medicine or research? SAF: I come from a farming family in Kentucky. However, my dad eventually became an engineer and helped design environmental systems for the Sky Lab and the NASA space program. He later worked on the Superconducting Super-Collider project in Texas and the CERN Large Hadron Collider near Geneva, Switzerland. IBTA: What attracted you to medicine and later to the brain tumour area? SAF: I was always interested in how things work and supported myself through high school doing construction work. Later in college I was an auto mechanic for years even during medical school. I worked with a neurosurgeon early in my medical school days doing histories and physicals for him and became interested in neurosurgery. My training led me to a mulitfaceted exposure to neurosurgery, adult and pediatric, and this reflected in my practice for years, eventually narrowing down to pediatrics. By virtue of my practice location (we are a tertiary care center for pediatrics in a very large multiple hospital 66
brain tumor population in an effort to answer questions about brain tumors in man
system that surrounds the greater Houston area) we see quite a few brain tumors per year. Brain tumors are an integral part of a pediatric neurosurgery practice. IBTA: How do you relax? Do you play music, go for walks, sail a boat? Do you have a hobby? SAF: I am an active bicyclist and ride daily. I am also a private pilot and fly frequently. My veterinary collaborators are about 100 miles away so I can often fly up, bike over to the vet school, help with surgery and come home. Lot of fun coupled with productivity. IBTA: What is the relevance of dogs to the study of brain tumours in humans? SAF: My interest in the dog project came about because we had three boxer breed dogs that died from seizures. We did not verify by imaging that our dogs had tumor, however, their seizure and subsequent clinical course were typical of canine tumors. Dogs with frontal tumor have voracious thirst and frequently walk in circles which was the consistent clinical pattern in our dogs. My curiosity and inquiry coincided with my introduction to a veterinary neurosurgeon at my old college alma mater, Texas A&M University. He and I with some colleagues
at MD Anderson Cancer Center here in Houston developed our program in which the priority is to evaluate whether these tumors are biologically the same as those in people. Since they are spontaneously occurring, they may be better than rat and/ or other models. A close secondary goal is to initiate treatment protocols based on these discoveries. In addition to histological similarities of various brain tumors, the veterinary group from Texas A&M University have published an MRI analysis of the similarities of imaging coupled with histology. (Young BD, Levine JM, Porter BF, Chen-Allen AV, Rossmeisl JH, Platt SR, Kent M, Fosgate GT, Schatzberg SJ. Magnetic Resonance Imaging Features of Intracranial Astrocytomas and Oligodendrogliomas in Dogs. Vet Radiol Ultrasound. 2011; 52:132-41). These imaging studies also parallel the patterns of tumors found in humans. In addition, we have 20 dogs that we have analysed for ZIP4 (ZIP4 is a zinc transporter). The over-expression of this protein in humans may be a factor in glioma survival prediction. This was recently submitted to the Journal of the National Cancer Institute [Editorâ&#x20AC;&#x2122;s note: see sidebar for study title and list of authors. A link to the actual abstract/ journal article was not available at the time of printing this magazine.] There are approximately 80 post mortem dogs from which we have flash
Above: Brain tumor survivors Sarah Mamalai and Bronwyn Cozens, who are both members of Brain Tumour Alliance Australia, read an article featuring how Bronwyn and her pet dog Lizzy-bette both had brain tumors at the same time.
‘ frozen the brains that had documented tumors. As collaborators are brought in on this project, various basic scientific analysis hopefully will further the initial hypothesis of human/canine similarity. On the treatment front, one investigator is interested in a trial of oral rapamycin in canine glioma. An alkylating agent has also been proposed for clinical trial with potential human application. With our capability and increasing experience of image guided biopsy and an increasing expertise in gross total resection of canine brain tumors, we are encouraged that this large volume of clinical data will open many doors for cooperative study with basic scientists and clinicians alike interested in curing human brain tumors. To date, this research project has been supported by enthusiastic private donors, especially dog lovers. Two major supporters have helped us. The Keith and Mattie Stevenson Foundation in Houston are big time dog lovers and have promoted ethical treatment of animals but have also
funded animal research. They have been paramount in helping us acquire the Radionics Omnisight Intraoperative Image guided system for use and continued support Lanie and Jerry Rose of the Dr Marnie Rose Foundation, have continued a
massive yearly fundraising endeavor with multiple events to raise money for brain tumor research. Their daughter, Marnie, a pediatric resident, died from a glioblastoma. She was treated here in Houston. Their website attests to their dedication in helping cure this problem. n
Imaging studies in dogs parallel the patterns of tumors found in humans. In Dr Fletcher’s lab, they have 20 dogs that were analysed for ZIP4 (ZIP4 is a zinc transporter). The over-expression of this protein in humans may be a factor in glioma survival prediction. This was recently submitted to the Journal of the National Cancer Institute. A link to the actual abstract/journal article was not available at the time of printing this magazine but below is the title of the study and a list of its authors. Gene Profile of Zinc Transporters Predicts Glioma Survival, Yi Lin1†, Jingxuan Yang1†, Vivian F. Zhu1, Yong Chen2, Yongzhi Wang3, Wei Yan3, Tao Jiang3, Georgene W. Hergenroeder1, Stephen A. Fletcher4, Jonathan M. Levin5, Dong H. Kim1, Jay-Jiguang Zhu1, and Min Li1. The Vivian L. Smith Department of Neurosurgery, the University of Texas Health Science Center at Houston,
Medical School, Houston, Texas 77030, USA; 2Division of Biostatistics, School of Public Health, the University of Texas Health Science Center at Houston, Houston, Texas 77030, USA; 3Department of Neurosurgery, Beijing Tiantan Hospital, Beijing, China; 4Department of Pediatric Surgery, the University of Texas Health Science Center at Houston, Medical School, Houston, Texas 77030, USA; 5Department of Small Animal Clinical Sciences, College of Veterinary Medicine and Biomedical Sciences, Texas A&M University, College Station, TX 77843-4474, USA
Cyprus Brain Tumour Association Oﬀers Support and encouragement to brain tumour patients and their families Aims to achieve recognition of the specific challenges • brain tumour patients and their carers face in dealing with the disease Gives information for brain tumour patients to assist • making treatment decisions Supports research for the development of more • eﬀective therapies. •
Tel.: 00357-99581230 / 00357-99871587
Email: email@example.com / firstname.lastname@example.org 4B Agiou Damianou Street • 2054, Archangelos • Nicosia • Cyprus Facebook: Cyprus Brain Tumour Association
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Walk for Kate curing brain tumors one step at a time By George Rose, President, Walk for Kate, Midland, Michigan, United States
n October 2009 my wife Kate was diagnosed with a pineal gland tumor (pineocytoma). After the initial shock and “What do we do now?” period subsided a bit, I started walking - first to clear my head, and second for exercise. During my walks, I thought about ways I could help my wife and others with brain tumors since we weren’t finding a lot of organizations strictly dedicated to this disease. It came to me one day that I could turn my daily walks into a fund raising opportunity and the seeds for “Walk for Kate” were planted. We incorporated in May 2010 and became a non-profit 501(C)3 organization in June. We held our first event in July. Since then, we’ve participated in 11 marathons and numerous community events, and we hold an annual MidMichigan Brain Tumor Awareness Walk in May of each year. This year’s walk was on May 19th in Midland, Michigan. One hundred per cent of all the funds we raise go directly to brain tumor research and patient care. All administration, travelling, and other costs are paid for by my wife and myself. In April 2011 my wife was thinking about things she could do to help “Walk for Kate”. The tumor and medicines have taken their toll on her and she simply cannot do things the way she used to. She gets tired and worn out very easily and has permanent double vision due to the tumor.
Above: George Rose, walking for his wife, Kate, a pineocytoma patient
One thing she can still do, and something she enjoys, is knitting although not for long periods of time. Kate came up with the idea of “Blankets for Brains”, and we’ve been making blankets ever since. She crochets and knits and I quilt. We both design and make the blankets, which we enjoy doing very much. We also take suggestions from the requestor about what kind of blanket or theme the recipient would like. Each blanket is custom made for the person it is going to. We believe everyone loves a warm fuzzy afghan, quilt, or blanket, and it is our goal to provide brain tumor patients with this welcome comfort. These blankets are handmade in clean, smoke-free environments and distributed to brain tumor patients who wish to receive one. It can be anyone who is afflicted with a brain tumor - any man, woman or child of any age who is suffering from this disease and could use some comfort. If someone knows any brain tumor patients
who would like a blanket, all they have to do is contact us through our website or send us an email. All we need to know is the name and address, age and sex of the recipient and some of his or her general likes (favorite colors, anything they really love like cats, etc). Then we will go ahead and make the blanket and sent it out as quickly as possible, usually with two weeks. We’ve made and sent out about 15 blankets so far. We’ve sent blankets to several different states in the US and as far away as British Columbia in Canada. However, we will gladly make and send a blanket to anywhere in the world where someone is suffering from a brain tumour and would like a warm and fuzzy blanket. There is no cost whatsoever to those who request or receive a blanket. We do accept donations of new fabric and yarn as well as monetary donations to help cover the cost of the materials and shipping. For further information please see www.walkforkate.org or email info@ walkforkate.org n Below: One of the colourful throws created by Blankets for Brains - this one was handmade for brain tumor patient “Scotty”.
Progress Against Brain Tumors THIS IBTA graphic presentation of advances against brain tumors is based on an interactive timeline developed by the American Society of Clinical Oncology® (ASCO®), which represents nearly 30,000 physicians who treat people with cancer and research new cures. An interactive version, which includes timelines of advances against a range of other cancers, is available online at www.CancerProgress.Net. Grateful acknowledgements to Dr Susan M Chang (content advisor to ASCO for the original on-line timeline version) and to Edwina Kelly (IBTA’s graphic designer) for the timeline’s conversion to this printed format. n 1994 National Cancer Institute establishes brain tumor research networks Spurred by emerging understanding about the complexity involved in treating brain tumors and the urgent need for improved therapies, the NCI establishes major brain tumor clinical research networks for adults and children. These groups are comprised of the nation’s top brain cancer experts from academic centers who collaborate to evaluate novel therapies for patients with newly diagnosed and recurrent brain tumors.
1999 New oral chemotherapy drug, temozolomide, increases glioma survival The FDA grants accelerated approval to the oral chemotherapy drug temozolomide (Temodar) to treat anaplastic astrocytoma (a form of high-grade glioma) that recurs following other therapy. The approval is based on early-stage data suggesting that the drug shrinks tumors and is generally well tolerated. In 2005, temozolomide receives full approval for this and other high-grade gliomas, based on data showing that adding the drug to initial radiation therapy increases two-year survival by as much as 50 percent.
1993 Adding chemotherapy to radiation after surgery increases survival for malignant gliomas A large analysis of the results of several studies shows that adding chemotherapy to radiation therapy helps patients with surgically treated malignant gliomas live longer compared to radiation therapy alone. Randomized trials had previously found that this approach yielded only marginal benefits, yet when the data from these individual studies were assessed in combination, the survival advantage became more pronounced. Despite this result, the still-modest benefits of the combination approach, and the potential for serious side effects, have led to continued debate about its use.
1993 World Health Organization develops universal system for classifying brain tu New international standards for classifying brain and nervous system tumors give docto researchers a common language for describing and sharing knowledge about tumor sta and characterization, genetics and treatment. Before this time, many different classificat systems were in use around the world, making it difficult to communicate and translate research findings and improve patient care. Experts now reconvene every several years update the WHO system based on growing knowledge about tumor classification and identification of new sub-types.
DID YOU KNOW THAT: Advances in the use of chemotherapy, including drugs that can cross the protective “blood-brain-barrier” and radiation, have helped triple (from 8 percent to 25 percent) the percentage of patients who survive at least two years with glioblastoma, one of the most common brain tumors. n
Refined imaging technologies have led to improved tumor diagnosis and monitoring, and enable doctors to precisely focus radiation treatment to protect healthy brain tissue. n
Recent genetic discoveries have led to the identification of distinct sub-types of brain tumors, making it possible for doctors to personalize care to individual patients and providing potential targets for new treatments. n
2003 Chemotherapy “wafer” active against malignant gliomas Use of a surgically implanted biodegradable wafer containing the anticancer medication carmustine (BCNU) is found to delay tumor growth and improve overall survival in some patients with gliomas. The wafer provides continuous chemotherapy directly to the tumor site to kill remaining cancer cells and to prevent or slow regrowth of the cancer. Today it is used in patients with recurrent malignant glioma and newly diagnosed glioblastoma, a highly aggressive form of glioma.
2009 Gene mutations linked to tumor aggressiveness Scientists learn that brain tumors with an alteration in the IDH1 or IDH2 genes are less aggressive than those without this mutation – a finding that may eventually enable some patients to safely undergo less intense therapy. The study also offers researchers a potential new clue regarding how some tumors form in the first place. The IDH1 and IDH2 genes are located on a pathway that governs the metabolic function of cells, and mutations to these genes may enable abnormal, or cancerous, cells to form. Continued research may guide future development of targeted therapies that interfere with the IDH1 and IDH2 genes in order to halt tumor growth.
2010s Timeline data © 2012 American Society of Clinical Oncology. All rights reserved. www.CancerProgress.Net Data reprinted with permission from ASCO by the International Brain Tumour Alliance (www.theibta.org)
MidAfter techn stere to di surro with be re
2010 Nine-gene test can predict glioblastoma outcome Researchers identify a set of nine genes that predict the likelihood that a glioblastoma tumor will respond to therapy. The research is used to create a test called DecisionDX-GBM. If validated in future trials, this test has the potential to help doctors choose the most effective therapy for a patient, and could be used to help identify new treatments targeting tumors that do not respond to standard therapies.
PRE-1970 1970’s CT scanning provides first clear image of brain tumors Researchers perform the first computed tomography (CT) scan on a human patient - a woman with a suspected brain tumor. With CT scanning, which uses X-rays to create images of “slices” of the brain, doctors are for the first time able to clearly see tumors arising in the soft tissue of the brain. Over the following decades, this technology continues to be refined and used in combination with other imaging approaches, such as MRI.
1970’s First promising chemotherapy for glioma Researchers report the first data on efficacy of the chemotherapy drug carmustine (BCNU). Unlike other chemotherapy drugs available at the time, carmustine is able to cross the blood-brain barrier and directly attack gliomas. Although this drug can cause significant side effects, the first trials show that it shrinks some tumors. Later trials show that carmustine and other similar drugs also provide a small but significant increase in long-term survival when used with other treatments.
-1980s Gamma Knife therapy introduced for treating brain tumors r nearly two decades of research, doctors begin using a non-invasive nique known as Gamma Knife to treat certain brain tumors. Also called eotactic radiosurgery, the approach utilizes precisely focused radiation waves isrupt cancer cell function and replication, while leaving the brain tissue ounding the tumor largely untouched. Gamma Knife may also be combined other forms of cancer therapy, including surgery. The approach continues to efined today.
umors ors and aging tion e to
1975-1980 Radiation established as standard treatment for glioblastoma Radiation therapy becomes a mainstay of treatment for glioblastoma, a highly aggressive form of glioma, based on data showing it extends median survival from 3 months to about 9 months. This is the first time a treatment is proven effective against any brain tumor. Today, radiotherapy is used alone or with chemotherapy, both before and after surgery, and in patients with inoperable tumors.
1980s MRI greatly improves ability to diagnose and monitor brain tumors MRI (magnetic resonance imaging) quickly gains widespread use following its introduction in the mid-1980s, replacing CT scanning as the primary imaging tool for brain tumors. This new technology provides the clearest-ever image of brain tumors and, for the first time, enables doctors to see small, low-grade tumors. Today, refined MRI technologies are widely used to diagnose brain tumors, assess their size and specific location, and non-invasively monitor whether a tumor is responding to therapy. Unlike a CT scan, which uses X-rays to create an image, MRI uses magnetic fields to create detailed pictures of the brain and other tissue.
2005 MGMT gene alteration predicts response to chemotherapy Researchers discover that patients with tumors carrying a specific alteration in a gene known as MGMT benefit from temozolomide (Temodar) therapy. The MGMT gene is involved in repairing DNA damage in cancer cells, including damage caused by chemotherapy. Tumors with a genetic alteration that silences this gene are unable to repair the damage caused by temozolomide, and therefore are more susceptible to the drug. On the other hand, tumors without this gene alteration are more resistant to the drug. Researchers continue to explore how to use this and other genetic information to identify which patients are most likely to benefit from chemotherapy.
2005, 2008 Researchers begin mapping the genome of glioblastoma In 2005, the National Cancer Institute and the National Genome Research Institute launch The Cancer Genome Atlas Project, with the goal of mapping the genetic changes involved in glioblastoma and other cancers. In 2008, researchers report the identification of several key mutations - in the ERBB2, NF1 and TP53 genes that are involved in triggering the development and spread of glioblastoma. It is hoped that these findings will help pinpoint new targets for drug therapies.
2006 Molecular sub-classification of high-grade gliomas predicts prognosis Using advanced molecular classification techniques to examine tumor samples, researchers discover distinct subtypes of high-grade astrocytoma tumors (a form of glioma). They find that each subtype has unique biological features that appear to influence the tumor’s behavior and response to certain therapies. The findings pave the way for future research that may help personalize therapy for each tumor and patient, ensuring better outcomes and avoiding unnecessary side effects.
2006 Genetic mutations affect survival for oligodendroglioma Two studies find that patients with oligodendroglioma tumors (a form of glioma) that lack certain parts of chromosomes 1 and 19 are more sensitive to treatment and have better survival than patients whose tumors are not missing this genetic material. Both studies also evaluated the benefit of adding chemotherapy to standard radiation, finding that this approach caused significant side effects and did not improve survival in the overall population.
2006 Chemically “illuminating” glioma tumors during surgery postpones recurrence The use of 5-aminolevulinic acid, a substance that reacts with and illuminates malignant glioma cells, is shown to improve surgeons’ ability to remove tumor tissue. Patients treated with this technique during surgery were significantly less likely to have any tumor growth after six months, compared to those who underwent conventional surgery.
2008 Bevacizumab (Avastin) receives FDA approval for glioblastoma Two early-stage trials suggest that giving the targeted therapy bevacizumab (Avastin), alone or with the chemotherapy drug irinotecan (Camptosar), may cause tumor shrinkage in patients with glioblastoma whose disease progresses after previous therapy. Based on these findings, the FDA grants accelerated (or early, conditional) approval for bevacizumab to treat glioblastoma. Bevacizumab is an “anti-angiogenic” drug, meaning it works by interfering with the development of blood vessels that tumors need to grow and spread. This marks the first new drug approved for treating brain tumors in a decade, and studies are ongoing to determine if initial treatment with bevacizumab improves overall survival.
Perspectives One father’s JPA journey with his two young children By Denis Goldenberg, New Jersey, United States
omeone who has never experienced brain tumors or cancer would see this story as horrible. However, a family with a child undergoing chemotherapy and radiation - or worse, whose child has succumbed to a brain tumor - would view this story as having a happy ending. It all depends on your perspective how cancer has affected you. This is our family’s story. We live in New Jersey (USA) and have three children, two of whom have juvenile pilocytic astrocytomas (JPAs). JPAs are commonly described as “benign” tumors. But what is “benign” about a growing tumor embedded in a child’s brain or spinal cord? Technically, these low grade tumors do not harbor the ability to metastasize (spread to other parts of the body), but they do inflict damage locally, growing and impinging on critical parts of the brain or central nervous system, often affecting vision, swallowing, speech, balance, headaches, sleep, or any combination of these. JPAs have been discovered by happenstance in adults. This has occurred when scanning for a head injury, and inadvertently discovering a dormant JPA that has existed in the adult’s earlier years, and poses no problem today. Jake is diagnosed with a JPA One such active tumor was discovered in my son Jake, who was an otherwise happy and active four and a half year old boy at the time. A drooping right eye and left-sided weakness caused us concern so we sought advice on why this should be happening. Jake was misdiagnosed by two separate ophthalmologists as having “Duane’s Syndrome”, a condition which causes the muscles controlling the 72
Above: Brother and sister, Jake and Rachel Goldenberg
movement in one eye (or in some cases, both eyes) to contract involuntarily and move the eye inward or outward on its own. The second diagnosis was the same, and the recommendation was eye surgery. Before undergoing surgery, my wife and I took Jake to a neuro-ophthalmologist who, in a matter of minutes, determined Jake had a “third nerve palsy” or something which causes one of the nerves to the eye to tell it to move. An MRI was needed immediately, as this doctor suspected something sinister even before the scan would confirm it. The MRI the following week stunned us. It revealed that our boy had a ping
pong ball-sized lesion at the midbrain pressing on the hypothalamus. After about ten weeks of chemotherapy, another MRI was performed. This time, the scan showed that chemo had not made a dent in the tumor, but there was actually some additional growth. What was previously considered a risky surgery to the middle of the brain - to be reserved as a last resort was now required. While neurosurgeons had differing opinions on how and if to do surgery, ultimately an approach behind the ear and through the right lobe was taken. Due to the encapsulation of the tumor, the pediatric neurosurgeon was able to remove 90% plus of the tumor, which
came back from neuropathology as juvenile pilocytic astrocytoma (JPA). Of the bad news that had preceded the neuropathology report, we held on to this relatively positive news. The tumor was not deadly as some had feared. After neurosurgery…and another shock The weeks and months after neurosurgery passed while young Jake struggled to regain his strength and balance. He lost the ability to walk but made slow, albeit steady, progress in other areas, while getting used to life in a wheelchair. Three years later Jake’s younger sister, Rachel, turned four years old. She started to show some odd symptoms such as walking a little hunched over and sometimes tripping. At the same time, she began to wet the bed every now and then. Rachel’s pediatrician recommended a visit to an orthopedic specialist, who quickly recommended an MRI. The MRI revealed what we, as Rachel’s parents, convinced ourselves could not be possible - that our four year old daughter also had a tumor, this time in the spinal cord. But this time, the tumor was coiled within the spinal cord, expanding the cord itself almost like a snake which swallows an object wider than itself. Her tumor was more easily accessible than Jake’s had been. It could be removed by a neurosurgeon and a titanium rod would later be placed in Rachel’s back to stabilize her spinal column. No chemotherapy or radiation would be needed. Unlike her brother, little Rachel recovered quickly. Can lightning strike twice? There are a couple of known conditions that are associated with familial JPAs: neurofibromatosis types 1 and 2. Each has its own symptoms, and causes a person to have multiple JPAs which appear simultaneously or over the course of time. Fortunately, our two young children did not show the traits of NF1 or NF2 and the hope is that their experience with JPAs was confined to their childhood. So there is a light at the end of the tunnel of the cancer world for them. Without the presence of a familial condition, what are the chances of two
siblings in the same family having the same pediatric brain tumour without any disease-specific genetic relationship? One in a million? One in ten million? One in a billion? The odds are too small to even calculate. There are no reported cases of familial JPA without neurofibromatosis. The known environmental causes of tumors - some chemicals and other toxins, and radiation are associated with other types of tumors such as leukemias, etc. Both children were born in different towns. Both towns, in the suburban/countryside had no current or prior manufacturing or known disposal sites. It was a mystery. Out of this situation arose concerns for others in our family such as our third child, an older brother with no symptoms. There are also several younger cousins. Should children who are otherwise healthy and have no symptoms, be subjected to sedation and MRIs for screening purposes? If so, how often? When can a parent breathe a sigh of relief? For our family, not knowing the cause of the tumors was one thing, but handling the shock of the unexpected - two children with brain tumours - was an additional challenge. The substantial caregiving required for a child recovering from extensive neurosurgery - and what can follow such as right sided weakness; inability to walk; inability to eat solid foods due to swallowing issues; difficulty speaking; inhibition and spontaneous aggression - is what can wear a family down to its breaking point. Learning from this ordeal However, if I have learned one thing through this ordeal, it is not to take away my son’s willingness to be happy, his eagerness to do more, and his amazing spirit just because I am feeling angry, sad, or frustrated. Seeking support to care for a disabled loved one is critical, and maintaining your positivity when your child has his, is not for a parent to take away. So, to get back to the subject of perspective. To maintain my sanity, I would view this story as one with a “happy ending”. A tumour in the midbrain - where Jake’s was diagnosed - is almost always NOT a
JPA (as Jake’s was), but the much more aggressive and likely fatal, “pontine” lesion. And this is a happy ending because so many others who have gone through the brain tumour journey do not ever have the opportunity to feel that “cancer is behind them”. We have been lucky and our “happy ending” has enabled us to find ways to help others who are less fortunate than we are. n
More information on juvenile pilocytic astrocytomas (JPAs) can be found on the following (US-based) websites: Fight Pediatric Low-grade Astrocytoma: www.fightplga.org Children’s Brain Tumor Foundation: www.cbtf.org Children’s Tumor Foundation (for more information on neurofibromatosis): www.ctf.org Pediatric Brain Tumor Foundation: http://www.pbtfus.org/about/ National Institute of Neurological Disorders and Stroke: http://www.ninds.nih.gov/ Neurofibromatosis Fact Sheet: http://www.ninds.nih.gov/disorders/ neurofibromatosis/detail_ neurofibromatosis.htm Childhood Brain Tumor Foundation: http://www.childhoodbraintumor.org/
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Radiosurgery for brain metastases By Christer Lindquist, MD, Ph.D. Professor of Neurosurgery, BUPA Cromwell Hospital, London, United Kingdom
he expected survival time of patients with untreated secondary tumors of the brain is short almost regardless of the origin of the primary malignant tumor. Fortunately, the treatment of secondary tumors in the brain has developed considerably over the past 20 years. Twenty-five years ago many oncologists took a very nihilistic approach to the treatment of cerebral metastases. Many tumors were never detected during the patientâ&#x20AC;&#x2122;s lifetime. Asymptomatic tumors were not found because routine scans of the brain were not part of staging the cancer. Even today many institutions do not include scans of the brain in the routine search for spreading malignant disease. Whole brain radiotherapy The nihilistic view on cerebral metastases was reflected also in the approach to treatment. Only single tumors in superficial locations of the brain were surgically removed whereas patients with multiple metastases were given whole brain radiotherapy (WBRT) or no treatment at all. Even with WBRT the chances of surviving more than a few months after the diagnosis of brain metastases are slim. The risk of local recurrence following surgical removal of single brain metastases has been reported to be as high as 40-50%. The combination of surgical removal followed by WBRT has been shown to reduce the risk of recurrence. This combined treatment approach has also improved survival for these patients. The improved outcome with adjuvant radiation is thought to be due to the destruction of microscopic tumor remnants after surgery. The rationale for exposing the whole brain to radiation even in patients with single metastases is the belief that one tumor in the brain is probably always accompanied by widespread micro deposits of malignant tumor elsewhere in the brain but 74
Figure 1. Transaxial MRI scan of the brain (T1W
Figure 2. Transaxial MRI scan with a similar
after a triple dose of gadolinium) in a 61 year old
orientation as in fig. 1 obtained from the same
woman treated for breast cancer by mastectomy
patient eight months after radiosurgery. Three of
and local radiotherapy one year previously. The
four tumors are gone and one is considerably
MRI was performed a week after microsurgical
smaller. Two small tumors depicted on other slices
removal of a left frontal lobe tumor. The image
were also gone. The patient remains in a good
shows remaining tumor. The patient had
condition and tumor free in the brain almost five
presented with speech difficulties. There are also
years after the Gamma Knife radiosurgery.
two previously unknown tumors in the image and other slices revealed an additional two tumors. All six tumors were treated by radiosurgery using the Gamma Knife.
undetectable by current imaging technology. However, WBRT alone is not an effective treatment for the large majority of patients with multiple metastases in the brain. The reason for this may be that in some cases the deposition of multiple metastases is from a cancer which is more aggressive than most cancers in patients with a single metastasis. Therefore the possible effect on the disease in the brain may not affect survival, which is governed by poor control of the systemic disease. In many patients with multiple metastases of macroscopic size it is, however, obvious on follow up MR- or
CT-scans that the tumor volumes are unaffected by the WBRT. PET scans can also reveal an intact metabolism in most tumors after WBRT. The dose of radiation delivered by WBRT to an individual metastatic tumor is relatively weak and therefore may be ineffective particularly in the core of the tumor where poor oxygenation may provide a sanctuary from radiation damage to tumor cells. As few as 30 per cent of patients treated by WBRT may benefit from the treatment and thus 70 per cent may be unnecessarily exposed to the risks of this form of radiation. The complications may be serious such as disturbances of memory, awareness, social behavior, and other aberrations of mental faculties. These serious side effects
usually occur after many months or even years. It should therefore come as no surprise that these problems were not commonly seen during the times when treatment of cancer was less effective than it now is. In those days, the patients usually succumbed to their disease long before the WBRT had caused its injurious effects on the normal brain. The toxic effects of WBRT on the brain also preempts repeated use if tumors reappear in the same or in new locations. Radiosurgery The late professor of neurosurgery Lars Leksell in Sweden introduced the concept of “radiosurgery” in 1951. Radiosurgery is defined as the delivery of narrow ionizing beams of radiation in a single dose tailored to a target volume with the intention of destroying it while avoiding radiation exposure of surrounding normal tissue. Physicians using the Cyberknife® and other devices also based on linear accelerators have broadened the term “radiosurgery” to include up to five sessions of radiation delivered on separate days. These treatments should more appropriately be called stereotactic radiotherapy since the biological effects of single and multiple exposures separated by hours have significantly different biological effects. Leksell and the physicist Börje Larsson developed what is now called Gamma Knife® for the purpose of radiosurgery. The first patient was treated in 1967 for a craniopharyngioma and the first treatments of patients with brain metastases were carried out in the Karolinska Hospital in Sweden in the late 1970s. To this day, the Gamma Knife in its latest versions remains the gold standard of radiosurgery. The introduction of radiosurgery for brain metastases has dramatically moved the management of this difficult disease forward. Whereas, before the advent of cerebral radiosurgery survival of cancer patients was strongly and negatively affected by the presence of brain disease, it is now the control of the disease in the rest of the body which is the primary determinant of survival. With increasing treatment success for systemic cancer with chemotherapy,
immunotherapy, radiation (including body radiosurgery) and more, the need for radiosurgery for brain metastases may be expected to rise considerably in the future. Today, the majority of patients referred for radiosurgery of brain metastases present with neurological symptoms. Few metastases in patients without neurological symptoms or signs are found because the patients’ oncologists do not usually include scanning of the brain when they look for spread of disease in the so-called staging procedure. A change in this practice should be seriously considered in view of the good results of radiosurgery for cerebral metastases. The typical patient presents with more than one metastasis. Previously, it was thought that in patients with brain metastases around 40 per cent had only one tumor. But with the tremendous improvements in the techniques of imaging the brain this figure has been dramatically reduced. With modern radiosurgical equipment treatment of multiple metastases poses no technical problems. The goal of radiosurgical treatment of brain metastases is palliative although in exceptional cases it may be curative. The chance of preventing the patient from dying of cerebral tumors after radiosurgical treatment may be as high as 80-90 percent. Prolonged survival is obviously an important goal but the fact that radiosurgery may prevent serious neurological consequences from growing tumors and concomitant brain swelling is also very important. The treatment adds quality of life and carries a risk of complications between zero and 20 per cent depending on the location and volume of the tumors to be treated. There is a weak correlation between the overall prognosis for the patient and the number of tumors present at the time of treatment. There is a stronger correlation between prognosis and total tumor volume in the brain. Radiosurgical treatment of patients with multiple metastases is therefore often very rewarding. Patient selection and advantages of radiosurgery”? Besides the superior treatment effects, there are a number of other advantages with radiosurgery compared to other treatment
modalities. Some of these are: 1. Brain metastases from any form of primary tumor can be treated. Thus, even tumors considered as being “resistant” to conventional radiotherapy such as renal cell cancers (hypernephroma) and melanoma can be treated. 2. The location of the tumor is of minor concern. Even tumors in vulnerable areas such as the brain stem, motor cortex, visual cortex, speech area etc. can be treated with limited risk. In some cases a reduction of the radiation dose with a corresponding small reduction of success rate may have to be accepted to afford reasonable risk. 3. The number of tumors which can be treated is only limited by the cumulative dose of “stray radiation” which surrounds each tumor treated and which affects the normal brain. Up to 20 tumors and sometimes more have often been treated without significant complications. With some radiosurgical equipment (Cyberknife®, Novalis®, and other linear accelerator based systems) it may be impractical to treat many tumors in a single session. 4. Radiosurgery for tumors in the brain can be repeated a number of times for a previously treated tumor (which is rarely needed) and for tumors appearing in other locations. The risk remains low. 5. Radiosurgery can be carried out with a low risk even if whole brain radiotherapy (WBRT) has been previously given. Some dose reduction may be required. 6. Radiosurgery can (and should) be used instead of WBRT after surgical tumor removal to prevent commonly occurring regrowth of tumor after surgical removal and minimize radiation-induced damage to normal brain. 7. Radiosurgery can be used during ongoing chemotherapy and therefore a delay in starting effective treatment of systemic disease is not necessary. Conventional radiotherapy to the brain is usually not recommended during or in close conjunction with chemotherapy. 8. Even very ill patients can have radiosurgery. However, if the state of the patient is in an irreversible deteriorating mode with a life expectancy, even with the best of care, of less than six months, radiosurgery may not be an appropriate choice. 9. Radiosurgery even for multiple Brain Tumour
metastases requires only one treatment session and the patient may leave the hospital the same day. This is obviously advantageous for the patient but also for health economics. Radiosurgery is not indicated for very large tumors pushing on the brain (so called “mass effect”) with an imminent threat to life. These tumors should be removed by conventional surgery if at all possible. Exceptionally, large tumors causing “mass effect” due to a significant surrounding brain edema can be treated by radiosurgery after administration of
steroids. The upper volume limit for radiosurgery of a metastatic tumor is around 20 cc in the supratentorial space and around 10 cc in the infratentorial space. The condition of the patient, the volume of the brain and the cerebrospinal fluid, the type of primary cancer and other factors should be taken into consideration before choosing radiosurgery as the treatment modality. Radiosurgery is also not indicated in terminally-ill patients with a short life expectancy and poor control of the systemic disease. Control of systemic disease is an equivocal term, which at
present may possibly be best defined by the absence of significant tumor metabolic activity, as defined by an fdg-PET CT-scan of the whole body in a patient with a good clinical condition. n
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Harper plays for brain tumour patients* I
n an unusual move the patient support group Brain Tumour Alliance Australia (www.btaa.org.au) has engaged harper Alison Ware of Canberra to play for brain tumour patients in the local hospitals, hospice, or their own home. Requests are made either by the patient, their family, or the health professionals who are caring for them. Alison describes herself as a clinical musician, not a musical therapist. She explains: “Therapeutic harp music is based on the science of sound. It is live, acoustic music played at the bedside of patients. Music is specifically tailored to each patient and helps provide an environment conducive to the healing process. “The purpose of therapeutic harp music is not to entertain or to give a performance. The emphasis is service and is patient focused. The intention is to promote healing (not curing) by bringing balance between body, mind and spirit.” Why the harp? Alison explained that the harp is an ancient instrument and has long been associated with the healing arts. The harp possesses unique acoustic qualities which provide a varied palette of tone colours, many of which are soothing. The harp has a wide pitch range and its unique 76
providing positive sensory stimulation augmenting pain management n providing distraction n aiding mental focus n reducing stress of the chronically ill n relieving anxiety n stimulating memory n allowing for the release of emotion and grieving n n
Above: Alison Ware and her harps
vibrations/ethereal effects make it a wonderful instrument for use in healthcare settings. The benefits of live harp music may include: n creating a calming environment for patients, families, visitors and staff n facilitating the transition process of the dying
Alison said: “I find harp music provides a quiet space in a patient’s day where they can rest, have distraction and relax. I find my pastoral care skills invaluable as I listen and support patients. The families, carers and staff benefit from this supportive service as well. For example a family member commented that she was so pleased that she was able to share that time with her sister while the harp music played. “I am currently studying for a Graduate Diploma in Pastoral Counselling at Charles Sturt University to continue my education. I feel very fortunate to be involved in this work.” Alison has a broad range of experience including working as a registered nurse, occupational therapy/learning support assistant and Celtic harp teacher. n *Alison describes herself as a “harper”.
hat for BTA A
BTAA has been endorsed by the Australian Taxation Office as a Deductible Gift Recipient ABN 97 733 801 179 freecall 1800 857 221 www.btaa.org.au
International Brain Tumour Awareness Week
28 October – 3 November 2012 Brain Tumour Alliance Australia (BTAA) is the only national support and advocacy organisation for the brain tumour patient, family and caregiver in Australia. Wear a hat for one day during International Brain Tumour Awareness Week (28 October – 3 November 2012) to raise funds to help support those affected by brain tumours. To find out more • email: firstname.lastname@example.org • go to our website: www.btaa.org.au • or visit our Facebook Group ‘Brain Tumour Alliance Australia’ and become a friend.
Each year, in France, 6.000 people are diagnosed with a primary brain tumor (2.000 with a glioblastoma). GFME, Glioblastoma Fundation Michele Esnault, is a support group involved in pediatric and adult brain tumors. GFME translates and publishes in French scientific publications of Pubmed and Asco on primary brain tumors. GFME provides support, help, guidance on treatments and clinical trials for adults and children diagnosed with brain tumor. GFME works in partnership with ARTC, Brain Tumor Association For Research to rise funds. GFME is a website http://gfme.free.fr a quarterly magazine, a phone assistance (33) 04.91.64.55.86, and two mailing-lists (email@example.com and firstname.lastname@example.org).The group includes 800 patients, care givers, friends and family members around the globe. For more details email@example.com
14/03/2012 7:37:09 PM
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Hope in physiotherapy for brain tumour patients By Carol Carr MCSP Head of Physiotherapy, Queen Elizabeth Foundation, Brain Injury Centre, Banstead, Surrey, United Kingdom
rom an early age I developed an interest in the challenges faced by people with disabilities and devoured autobiographies of those people who had faced and overcome adversity. This was due largely to the work that my family was involved in at Banstead Place, part of the Queen Elizabeth Foundation. My mother worked as the personal assistant to the Principal and then for the Mobility Centre which is also part of the Foundation and my brother worked in the recreational department. In the 1970s Banstead Place offered independent living skills to disabled school leavers, and I think it was due to my early introduction to disabled people and my interest in the person behind the disability that moulded my future. I started my physiotherapy career as an assistant in a hospital in Epsom, Surrey (UK) and worked with two incredible physiotherapists on the medical wards. They encouraged and supported me to train as a physiotherapist. My interest in the diverse nature of symptoms that the patient experiences following a neurological event remained with me and, once qualified, I specialised in neurology. In this field no two patients are the same and each person brings their own unique challenges to the case, together with their own personality, interests and background. Physiotherapy needs of brain tumour patients In the1990s Banstead Place evolved into what is now known as the Queen Elizabeth Foundation Brain Injury Centre and I have worked there since 2002. The Brain Injury Centre has a unique set-up with therapy, educational, vocational and recreational facets. Its main focus is providing in-patient rehabilitation to young people with an 78
Above: Physiotherapist Carol Carr (right, in black) of the Queen Elizabeth Foundation working with a brain tumour patient (left) on high level balance control.
acquired brain injury, but in the last year we have also started to offer outpatient therapy. This venture is proving to be very rewarding and, together with the residential clients, I have met some amazing people. Providing physiotherapy to people who have a brain tumour has its own challenges but essentially it is no different from treating patients with other neurological disorders. I use the normal movement approach based on the Bobath concept in my work. This focuses on muscle length and alignment, improving strength, balance and re-education of movement control. Constant assessment and analysis of the patientâ&#x20AC;&#x2122;s current movement control is fundamental to deciding how to approach their treatment on a session by session basis. Conversely, the physiotherapy needs of the patient who has a brain tumour
may have a wider remit. This has been described as â&#x20AC;&#x2DC;hope through physiotherapyâ&#x20AC;&#x2122;, the dedicated time to focus on a specific goal and to take time out from the diagnosis. The feeling of being able to progress and improve their physical ability gives a patient a feeling of normality and a sense of achievement. A physiotherapist often provides not only physical but psychological and emotional support to their patients. A close rapport is often built due to the amount of time spent with that person and the intimate nature of what is addressed during treatment. These and other themes are identified in recent therapy research (ref: Diz Hackman 2011, Physiotherapy Research International vol 16 issue 4 pg 201-217 DOI: 10.1002/ pri.506).
Connecting with the person you are caring for I have found that brain tumour patients have incredibly high motivation and drive to improve their situation. It is essential that their goals for treatment are known and factored into treatment. This might be as obvious as being able to walk across the room or as diverse as being able to work the brakes on their mountain bike. Tapping into the patient’s interests and getting to know the person behind the diagnosis is a vital and very rewarding aspect of my job. It is important that goals are achievable and initially it may be necessary to break down a large goal into bite size chunks to demonstrate progress. It is also important to be able to help your patient manage their expectation of the amount and speed of their progress. People are often keen to have exercises that they can practise at home with and without support from their families. This can give everyone involved an important focus to their time outside of therapy and a feeling of ownership and control. It is essential, however, for there to be a balance between living your life and living for rehabilitation. I believe that you can’t be an effective neurological physiotherapist unless you are able to care about and connect with the person you are working with. You are often meeting people when they are at their most vulnerable and they need to be able to trust in your knowledge and expertise. Treatment often includes challenging the patient’s balance control and exposing them to demanding positions which can initially feel scary. I feel it is important to work in an environment that feels safe, relaxing, non threatening and non judgemental. Owing to the nature of a brain tumour and the variety of medical treatments to which the patient may be exposed, their physical condition and fatigue levels can vary and fluctuate during their rehabilitation. This can be very demoralising for people - patient and therapist alike - so understanding that this is not unusual can be reassuring.
deteriorating due to progression of the disease, physiotherapy has an equally important role. The focus may shift to working on more functional goals, considering compensatory activity and more use of adaptive equipment. Maintaining a positive outlook and showing patients how they can maintain some independence and take control of part of their life, however small, is critical. Working so closely with people in this way can be emotionally challenging and it is essential that you are able to maintain professional boundaries, but it is also important to care about the outcome of a patient’s treatment. Support from colleagues and the team you work with is vital; being
able to share your emotions before you leave work for the day helps you to manage this. When I tell people what I do and the type of patients I treat, they often comment on how hard it must be and what a depressing and difficult place The Centre must be to work in. This couldn’t be further from the truth. The Centre has a great atmosphere and a positive vibe. I meet remarkable people, the majority of whom have a very positive outlook and are keen to progress their ability. We build a close relationship whilst working together and it’s important that we have fun, laugh at life in general and work hard. It’s a privilege to be able to work in this field. n
Walking Together Cindy Rosser, the Family Outreach Coordinator for the Michael Quinlan Brain Tumor Foundation (MQBTF) in Kentucky wrote to advise us that the MQBTF (which merged in October 2010 with the Brain Injury Alliance of Kentucky/ BIAK) and the BIAK had their first joint “Walking Together” event on 14th May 2011 on the Belvedere of the Louisville, Kentucky waterfront. 475 walkers took part and 1,476 miles were achieved and donated to the
IBTA’s “Walk Around the World for Brain Tumours”. Thanks so much MQBTF and BIAK! Here are some photos of the event, which included a “Blueberry car” and a pie-throwing competition with the ‘victims’ resembling some of the local specialists. But there were also the walkers. n
Influencing a patient’s life in a positive way The feeling that you are able to influence someone’s life in a positive way and send them out after a session with more activity than they came in with is incredible. However, if a patient’s condition is Brain Tumour
To love what you do, be happy in what you do: a brain tumor support group facilitator’s thoughts By Patty Anthony, RN, BSN, CNRN, JFK Brain Tumor Center, Edison, New Jersey, United States
’ve been involved in facilitating the Central New Jersey Brain Tumor Support Group in the United States for over two decades. October 2011 was my 20th anniversary of doing this. We are an independent, non-profit support group. We work with our sister group in south central New Jersey and also work closely with Al Musella, founder of www.virtualtrials.com. I work as a neuro-oncology nurse with Joseph Landolfi, DO, Director of NeuroOncology at the JFK Brain Tumor Center in Edison, New Jersey. The JFK Brain Tumor Center is a comprehensive center, so a lot of support comes from them to our group. I am very fortunate to work in a facility that is running some of the top brain tumor trials. We currently participate in two vaccine trials, as well as the Tocagen trial and the Novocure trial. Dr. Landolfi and I are also trained for the Novocure commercial device for recurrent glioblastoma multiforme (GBM). My work at the JFK Brain Tumor Center allows me to bring the latest advances to our support group. How our brain tumor support group meetings work At this stage, I really feel that our support group runs itself. For the most part, I am the medical information specialist and try to help make sense of the brain tumor rollercoaster for patients, their caregivers and families. This includes, but is not limited to, education on symptom management, brain tumor protocols, insurance and medicine issues. I do not work alone. I work as a team with Stan Shrodo, our group’s secretary. Without Stan and his wife Virginia, our group would not run as efficiently as it does. They make sure all the mailings and 80
We also have a summer picnic and end-of-the-year party, so the group can enjoy one another’s company socially. We raise awareness together by participating in marathons and walks. Some of the group members have a “pre-group” dinner outing before the meeting. Many friendships have come out of the group. We laugh together and cry together, but this makes us unique as a group. People who are involved in the group “get it”. They know the trials and tribulations of the brain tumor journey and it unites them with a very strong bond. Above: Patty Anthony, facilitator for the Central New Jersey Brain Tumor Support Group in the United States
announcements go out. Most of all, they make sure the group has plenty to eat and drink. Fundamentals are always first! We meet once a month. We always start with announcements and try to celebrate birthdays, tumor date anniversaries, and good news. If a new therapy or brain tumor issue arrives, we try to keep the group well informed. We have general meetings. These are meetings where the group’s members share thoughts with one another. They talk about coping with the diagnosis and treatment challenges faced by people with this disease. We invite researchers, physicians, nurses, neuropsychologists, alternative therapists, nutritionists and lawyers. Whenever there is a need to be addressed, we look to an expert in the field. To help cope with the journey of having a brain tumor we also think it is important to offer yoga, meditation and other alternative therapies to the group to help people relax.
Many different formats for a brain tumor group There are many different group formats. We believe that anyone who is affected with a brain tumor can come to our meeting. Survivors, caregivers, families, friends and children participate in the group. People who have lost a loved one come back from time to time and share their experience to help others. We try to split the group a couple of times a year into two sections: the survivor group and the caregiver group. There are just some topics and concerns that a mixed group cannot talk about to one another. I feel that this is an important session for each group. Being able to share feelings and fears without hurting your loved one’s feelings is so important. Both groups of people share a loss once a person is diagnosed and it needs to be talked about. On occasion, we bring these two sections back together at the end of a meeting and discuss topics and common themes from each session. It allows for each group to reflect on the other’s perspective. For example, often
the survivor feels over-protected by the caregiver. The caregiver might not see his/ her behavior in this light. Bringing these issues up in a more general setting then allows for open communication between the survivor and caregiver when they are together. What training or background does a facilitator of such groups need? This is a tough question because I feel that someone can hold a nursing degree or a social work degree, but not everyone “gets it” when you work with the brain tumor population. I believe I learned by default. I saw the need for a support group in our area. With the help of a neurosurgeon, I took on the responsibility. I was like a sponge, learning from the physicians I worked with and then reading journal articles on how to facilitate a support group. I feel both aspects are important for running and maintaining a group. Over the years, my knowledge base grew. But what I have learned mostly
comes from survivors and caregivers themselves. Their experiences and challenges have made me who I am today. I take a little bit from every person’s brain tumor journey to help the next person. This kind of experience has become a part of me, and with it, I can help others. A nurse and social worker are a great complement to one another in a group setting. I think a nurse who has knowledge of brain tumors with the guidance of a social worker for counseling and group dynamic skills is the most effective combination. Our group originated with a social worker but we have not formally involved one for some time although we now invite a social worker to our meetings when we need their expertise. Our group also has many “lay person” brain tumor experts who have filled in and have been very valuable as leaders. Our group would not run so well if Stan and many other members did not pitch in
Above: Nurse Patty Anthony and her family
on a weekly, and sometimes daily, basis to help. Mostly, I think a facilitator’s heart has to really be in it for the group to be successful. A good facilitator needs knowledge of brain tumors, their treatments and effects of treatments. A facilitator must also have compassion for those who are coming to the group. We also need passion for what we do as a profession and how it affects the lives that we touch. A successful facilitator needs professionalism because we are dealing with such a challenging population and it can be difficult to keep our feelings and thoughts to ourselves. Finally, a facilitator needs flexibility because you never know what is going to happen. When patients are newly diagnosed Newly-diagnosed patients may fear coming to the group and hearing horror stories from those who are further along on their journeys. I always encourage newly diagnosed patients to try the group. When patients actually come to the group they usually do not experience this fear. Often, they cannot tell who has the tumor! I feel that people in the group truly want to help those who are newly diagnosed and share their experience to guide them, not scare them. We have been lucky with a strong, positive support group. People come when they are in Left: Patty Anthony (left) and Debbie Persaud, brain tumor patient activist, breast cancer survivor and truly amazing woman, cross the finish line at the New Jersey Half Marathon and raise funds for the Central New Jersey Brain Tumor Support Group
need of support, information and/or comfort. Those who are newly diagnosed come and listen and then decide if they need to come back. When people are doing well, they may feel they don’t need to come to group meetings. However, we always welcome them back at any time. Others need and want to come for the support to cope with this devastating diagnosis. Different diagnoses in the same support group Our group has coexisted for so long that we function very well together with no prejudices. There are times when we have had larger meetings and split the group into patients with non-malignant and malignant brain tumors. I truly feel that everyone helps each other cope. A low grade tumor has the potential to become more malignant so patients with this type of tumor look to what treatment options they will have in their “basket” when the time comes. We also know that the tumor’s location, whether malignant or not, can
cause problems. Any tumor can grow back and can become more aggressive. Our heterogeneous group has a unique bond that is usually seen within more homogeneous group settings. One of our members did branch off and start a group called “It’s Just Benign”. We have members who participate in both groups. My most challenging moment running a support group There are meetings when one person tries to monopolize the gathering. However, you deal with the group dynamics as they surface and then it is over. My most challenging moment is when a person has come to the end of their journey. Some are cognizant of what lies ahead for them and there is nothing else as a health professional that I can do. On the one hand, it is difficult to go to funerals and visit patients in hospice and on the other hand still maintain hope for the next person diagnosed. This is where my faith in God and my patient experience continues to guide me to help others. Knowing that the person at
Walking for brain tumour research
Above: New Zealander Lynda Tse walked for brain tumour research and donated her mileage to the IBTA’s “Walk Around the World for Brain Tumours”
LYNDA Tse, who is the wife of IBTA Advisor Chris Tse in New Zealand, completed a 7km walk in February 2011 to raise funds for the Malaghan Institute in Wellington (NZ) which
is running a dendritic cell vaccine clinical trial for recurrent glioblastoma multiforme (GBM). Lynda, who was diagnosed with a GBM in March 2006, was part of a 57 member “Run For Research” team (some of whom, like Lynda, walked the course). Lynda donated her mileage to the IBTA’s “Walk Around the World for Brain Tumours” and she also raised NZ $985 for this research. Lynda said: “There are very few clinical trials open for brain tumour patients in New Zealand so I was very happy to support the Malaghan Institute in their research. Besides, it had the dual benefit of keeping me fit!” You can check out Lynda’s blog here: http://www.fundraiseonline.co.nz/ LyndaTse. n
the end of their journey allowed me to be part of their care helps me to grow both professionally and spiritually. As far as advice for those who are just starting a brain tumor support group is concerned, since I was little, my father instilled in me that you have to love what you do to be happy in what you do. I believe that to run a successful and meaningful brain tumor support group you have to really want to be there. You are bringing people together with a challenging and life-changing diagnosis. You need to listen to the group’s needs to better provide and help brain tumor patients and their families to live and cope with their illness. n
Charity balloon walk reaches new heights Charles and Olga Grant reported that the Charity Balloon Walk, Lake Vyrnwy, Wales, was held on 4th June 2011 with 41 walkers and five dogs accumulating a total of 533 miles for the “Walk Around the World for Brain Tumours” target. The walk raised GBP £6500 for the Andrew McCartney Trust Fund. Dr Andrew Peet and three fellow scientists from the University of Birmingham attended the walk. The scientists are working on a project to which the Trust Fund donated £25,000 last year. A feature of the walk this year was a special bell that had belonged to Andrew. It was rung to start the race and each finisher rang it as they reached the end. Here is a photo from the walk. The balloons, which were carried during the walk, were a new feature this year. n
Fondo Alicia Pueyo For research on children’s brainstem gliomas
Fighting Diffuse Intrinsic Pontine Gliomas Funding research on brainstem gliomas Supporting families fighting this terrible disease Promoting international collaboration to find a cure
Current Research Project: Title: Therapy with oncolytic adenovirus via Convection Enhanced Delivery (CED). PI: Jaume Mora, MD, Phd Institution: Hospital Sant Joan de Déu (Barcelona, Spain) Collaborations needed to fund this project Those interested, contact firstname.lastname@example.org
for 30 years
Through the generosity of donors, we have... • Funded over 100 brain tumour research projects • Developed the world-leading Brain Tumour Patient Handbooks • Built a support and education network across Canada for patients and families Thank you to the brain tumour community for being pillars of support on the journey to find the cause of and cure for this devastating disease.
Learn more at www.BrainTumour.ca/ 30YearsofHope
www.fondoaliciapueyo.org email@example.com c/Santa Rosa, 39-57 08950 Esplugues de Llobregat (Barcelona) Jordan (right), Brain Tumour Survivor
Iraqi Kurdistan: challenges of treatment, information and support services for brain tumour patients By Mustafa Khasraw, MBChB MD MRCP FRACP, Medical Oncologist IN November 2011, at the Society for Neuro Oncology (SNO) conference, I was pleased to find an interested audience at my brief talk about neuro-oncology in Iraq. As a medical oncologist/neurooncologist practicing in Australia, it has been a very rewarding experience to teach and provide oncologic advice to the newly established cancer services in Sulaimaniya, Iraqi Kurdistan. Brain tumours are relatively common in the Kurdish region and most patients are rather young. As I have not been to Baghdad, my experience is limited to the city of Sulaimaniya and the second hand account from oncology trainees in Sulaimaniya who were from other parts of the country - mainly Mosul, which is the second largest city in Iraq, after Baghdad. Years of war and instability Years of war and instability have driven many Iraqi physicians out of the country, and the health professionals who provide care
now are a mix of the old generation who are retiring and the younger generation who had little professional contact with the outside world for about two decades during the wars of the last century.
Far Left: Dr Mustafa Khasraw Above: The shared paediatric oncology ward where children receive their treatment
Nevertheless, after the United States-led invasion of Iraq in 2003 there was a sudden change in various aspects of life especially with elimination of the sanctions on oil export. Most noticeably, this has led to an influx of money into the country. This in turn has been reflected in various aspects of life. For example there is a substantial
increase in building, travel and tourism. However, little has been invested in healthcare infrastructure and education and very little in medical research. Brain tumour treatment and its challenges Most patients are seen in governmentrun hospitals where care is provided free of charge. These hospitals end up taking on an enormous burden. Small private hospitals and clinics are scattered through the region but most of them only provide day surgery. Anticancer therapies including temozolomide and bevacizumab in the case of gliomas, are available at no cost in Sulaimaniyaâ&#x20AC;&#x2122;s Hematology Oncology Hospital (Hiwa). But they are only available in a pulsatile manner, which means that there is a limited supply of most drugs but often the hospitals run out of stock and Left: The waiting room of the outpatient clinic at Hiwa Hospital in Sulaimaniya
therapies will not be available for many weeks until a new supply is delivered. More fortunate patients and families purchase drugs from outside the country or have relatives send medicines from abroad. Often these medications are transported in conditions far from optimal. When it comes to brain tumours, CT scan and MRI imaging are generally available. Similar to elsewhere, brain tumour patients are often referred initially to neurosurgeons. The accepted view amongst most neurosurgeons in the region is that maximal removal of the tumour has no impact on survival of the patient. Thus, in most cases only a biopsy is performed, and a high-grade brain tumour is generally seen as a condition without much hope. To quote an oncologist from another large city in Iraq: “Tissue diagnosis is often not available because most neurosurgeons hesitate to operate on or biopsy what they consider hopeless cases; or patients are considered unfit for anaesthesia and they only have a radiological diagnosis. Only patients referred for adjuvant therapy are registered in our centre. We generally don’t record data about GBMs.” One radiation oncology centre for more than a million people In the Sulaimaniya region, which has a population of more than one million, there is one radiation oncology centre that has a single linear accelerator (radiation delivery machine). Treatment is prioritized and offered first to patients with curable conditions. Newly diagnosed malignant brain tumour patients typically wait two to four months after the initial diagnosis to take their turn and start radiation therapy. Patients and families, who have the means to do so, travel to neighbouring countries for radiation therapy but the rest are commenced on temozolomide (if available at the time) while waiting for their turn to start a radiotherapy course. This is only if they are well and alive by that point. Paediatric brain tumour patients are cared for using the same practice of radiation and chemotherapy but there is no specific support mechanism to address the special needs of these sick children and their families. Nursing care is the area in greatest need of reform. The “medical aides” who
are responsible for nursing tasks receive a shorter training compared to nurses in a western-style hospital. This issue has social and cultural roots that have proven difficult to change. As well, attitudes of some physicians and surgeons are very nihilistic towards cancer in general and even more so in the case of brain tumours. As such, it is a diagnosis which is considered a fatal condition and hence, unfortunately, the belief is that there is ‘no point in treating them’. To the best of my knowledge there are no brain tumour patient support groups in Iraq. However, I think that it would be possible to encourage the establishment of such a group. If there is an initiative it will be helpful if the International Brain Tumour Alliance could extend assistance. Reforming the healthcare system Although Iraq is a rich country and there is abundance of wealth, the country has been through many devastating wars and this has left a deep scar in the health and education system. Despite the wealth from oil, the healthcare system in Kurdistan is suffering from lack of resources and systematic structure. Whenever there is instability, there will be teams of professionals who abuse their powers and status. Recently, there was a lively debate among health professionals and in the local media about healthcare reform. Reforming the healthcare system in Kurdistan is much more challenging than in a western country. The issues are multifaceted because of cultural, political and social difficulties. People are quick to point out the problems but very few actually highlight the solutions or possible steps to take to address these challenges. The government and especially the Ministry of Health must act and do more to drive reform of healthcare. But patients will also need to be educated to cooperate and ensure their rights are addressed. Dissemination of information, debunking myths and promoting evidence-based medicine will play a major role. On the positive side, an American pathologist (Dr Mike Hughson) has decided to spend his retirement years in Sulaimaniya and he has established a high quality pathology service at one of the hospitals that provides the service for
free. This includes modern techniques such as immunohistochemistry and they have also started fluorescent in situ hybridization for certain indications as well as reporting pathology results in the modern standardised manner. Positive steps... Despite all of the obstacles, there is an active oncology training program at Hiwa Hospital led by the haematologist Anwar Sheikha, who has returned from the United States to achieve this. The program is recruiting trainees from all over Iraq. The Dean of the Medical School in Sulaimaniya (Dr. Ari Sami, University of Slemani/ http://www.univsul.org) is a capable neurosurgeon who has shown the will and interest to promote scientific research. Furthermore, the learning capacity of the students is encouraging. The Ministry of Higher Education has established a program to offer scholarships to students following strict criteria to study a higher degree at a Western university. Nevertheless, there will be an enormous benefit for Iraq if Western health professionals could extend support in any form to help patients in this part of the world. I was pleased at the end of my talk at the SNO meeting last November to be approached by a number of medical and radiation oncologists who expressed their preparedness to join in my next visit to Iraq. We are planning to organize a cancer symposium in Sulaimaniya in October 2012 with speakers from leading international cancer institutions. n Special thanks to Dr. Hazha Abdulla, medical oncologist at Hiwa Cancer Center, for assistance with the writing of this piece and providing the photographs. Sadly, Dr Abdulla lost her mother two years ago to a glioblastoma multiforme.
Above: Medical staff at Hiwa Hospital
Patients and patient advocates are at the heart of what we do An interview with Sarah Lindsell Chief Executive Officer of the Samantha Dickson Brain Tumour Trust, United Kingdom
IBTA: What is your current position in the brain tumour movement? SL: I’m the Chief Executive Officer of the Samantha Dickson Brain Tumour Trust (SDBTT), the largest brain tumour charity in the UK. We currently fund over 20 peerreviewed research projects, provide UK-wide support and information to people living with and affected by a brain tumour and we campaign to raise awareness of brain tumours. We have raised over £10 million to date and this year celebrate our 15th anniversary. I had the privilege of joining SDBTT a year ago. IBTA: What led you to become involved in this way? SL: I was drawn to the charity not only by the very personal story of the Dicksons (parents of Samantha and founders of the charity) but also its impact through research, support and campaigning. From a social change perspective, charities have a very real role to play in improving the outcomes for those affected by a brain tumour; supporting the highest quality research; and providing services to meet the needs of those at every stage of the disease. IBTA: How do you cope with the pressures that develop in this work? SL: Every day I meet families who are coping with the diagnosis of a brain tumour, supporting one another and others. I also meet families and friends who are doing the most wonderful and sometimes crazy things like sitting in baths of custard, throwing themselves out of airplanes and running marathons to raise money to fund research into brain tumours. I’m in regular contact with researchers who we fund throughout the UK who work tirelessly to find a cure, better treatments and ways to diagnose 86
IBTA: What, in your opinion, is the main challenge facing brain tumour support, advocacy, information and fund raising organisations today? SL: The current economic climate and changes in the UK’s National Health Service present very real challenges for those in the brain tumour sector. This puts additional pressure on the sector to work more efficiently and effectively, to collaborate and to prioritise.
Above: Sarah Lindsell, Chief Executive Officer of the Samantha Dickson Brain Tumour Trust in the UK.
earlier. It is these connections that inspire and enable me to cope with the pressures that can develop in this work. And while SDBTT keeps me quite busy, outside of work I have a wonderful family that remind me of the joys of glitter, splashing in puddles and baking cookies. IBTA: What gives you the most satisfaction from your work? SL: Knowing that the work we fund has a direct impact on the families whose lives have been turned upside down through brain tumours. Many brain tumour charities are supported and staffed by those who have been personally affected. This gives charities a very real grounding. However, when an issue or charity starts to attract and inspire activists who don’t have a personal reason for getting involved then - in partnership with those directly affected - real change, impact and growth in income to fund research will happen. It is humbling to be part of this.
IBTA: What, in your opinion, are the major brain tumour campaigning issues facing a charity like SDBTT and what can the brain tumour charity sector as a whole do to push these issues forward for brain tumour patients? SL: Alongside the other UK brain tumour charities, we are campaigning for increased investment into brain tumour research, implementing best practice guidance and achieving earlier diagnosis. But it is this latter issue in which we have invested heavily via the HeadSmart campaign. [Editor’s note: see separate article on HeadSmart in this issue of Brain Tumour.] IBTA: What are your thoughts on personalised medicine and targeted therapies for brain tumour patients? SL: We are entering an age of personalised medicine which allows the tailoring of medical treatment to the individual characteristics of each patient with the potential for patients to more often receive treatments they are likely to benefit from, and sparing them side effects of therapies from which they will not benefit. SDBTT strongly believes in this approach and is proud to have funded research in this area. Firstly, we have funded research at University College London looking at
‘ three genetic changes in glioma tumours that have the potential to be used for personalising treatment. Secondly, our research on medulloblastoma at Newcastle University has revealed three different risk groups for this tumour type. A European clinical trial which we are co-funding is now starting, which will begin to test different treatments for these groups. IBTA: Do you think patients and/or patient advocates should be more involved in the design of clinical trials and ethics committees and if so, how? SL: Patients and patient advocates have to be at the heart of what we do. Most of the trials we fund have patient representation, for example on a trial steering committee. Whenever we are approached by a clinical trials group wanting patient input, we aim to help wherever we can. For us, an ethos of patient involvement applies across all areas of our organisation. In relation to research, we have two lay members who have been personally affected by
brain tumours on our Grant Review and Monitoring panel (GRAM). They provide valuable input to the panel in selecting which grants to fund. We also have patients regularly involved with our support services and campaigning work, particularly HeadSmart. IBTA: What, in your opinion, is the thing which is most lacking in the brain tumour journey regarding giving support to patients and their caregivers? SL: I hear regularly that the key thing lacking in the brain tumour journey regarding support is accurate, timely and accredited information. We are currently developing technologies and methodologies to enable those affected to drive information creation, development and use. IBTA: What would be the first three items on your wish list for brain tumour patients? SL: The first three items on my wish list would no doubt be the same as
everyone reading this: we need a cure, better treatments and earlier diagnosis. To achieve this, we need more funding for research and in the meantime we need to provide relevant support and information for those affected. n
The 2012 International Brain Tumour Awareness Week is from 28th October to 3rd November.
Free bulk copies of this magazine are available to organisations on a shared-freight-cost basis. Contact firstname.lastname@example.org
CBTRUS CENTRAL BRAIN TUMOR REGISTRY OF THE UNITED STATES
CBTRUS provides a resource for timely, updated statistical data for all Primary Brain and Central Nervous System Tumors from population–based cancer registries in the United States.
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The uneven standard of care for brain tumor patients in Russia: can anything be done? By Dr Mikhail Laskov, Hematologist/oncologist, European Medical Centre, N.N. Blokhin Russian Cancer Research Centre Moscow, Russia
ussia is a huge country with unevenly distributed human, financial and medical resources. Some regions are extraordinarily rich with developed infrastructure and abundance of qualified medical professionals. Others lag behind and have suboptimal resources for diagnosis and treatment of brain tumors. There are a number of issues that make care of patients with brain tumors in Russia so different, depending on the region. Some of these issues are: age group; medical speciality leading the care of these patients; geographical location of the patient; social group; and healthcare priorities of local authorities. The goal of this article is to describe factors influencing neurooncology care in Russia and to make some suggestions on how to improve the way it is done in Russia. Chemotherapy? Radiotherapy? You’re kidding! There is nothing left after surgery! Brain tumor care in our country was traditionally under the supervision of neurosurgeons and a long time passed before other specialists were recognized as part of brain tumor care. After all, neurosurgeons usually are the first to see a patient with a primary brain tumor. For this reason, even now, it is not uncommon to see that chemotherapy is supervised by neurosurgeons. Many regions lack dedicated brain tumor oncologists and radiation therapy doctors. Furthermore even brain tumor oncologists are often former neurosurgeons without basic oncology education. This is certainly something that can be changed by including more neurooncology in basic training and more 88
Above: Dr Mikhail Laskov with his three daughters while on vacation in Cyprus.
time devoted to neurooncology in rotation in brain tumor centers. Too big to fail? Russia is a huge country with a very heterogeneous population. Seventyeight per cent of the population lives in the European part of the country which comprises 25 per cent of the territory and only one fifth of the population lives in the remaining 75 per cent of the country (eastern part). The Russian healthcare system takes its roots from the Soviet system which, as everything else in the country, was very hierarchical and vertically organized with the main center in Moscow and at best one (if any) regional centers that could carry out tertiary care. However, a regional center in Siberia may be thousands of kilometers away from a patient’s residence in the Siberia region and that makes outpatient care too expensive and demanding for the
family. If the patient needs some high-end modalities like intensive chemotherapy plus stem cell transplant (e.g. children and young adults with embryonal tumors) it can only be done in two or three large primary centers situated mainly in Moscow and St. Petersburg. So families have to relocate miles away from their home towns causing huge distress, loss of jobs and the need to sell their properties. In many instances this is the only opportunity to give a patient a better chance for survival or at least prolongation of life. The government is dealing with this problem by installing new cancer facilities in major cities aiming to save on existing infractructure of large “medical hubs”. In the last five years at least one large transplant center in St. Petersburg and one large pediatric cancer center in Moscow were built. My personal feeling is that this is not the perfect way of dealing with this issue because it does not take into account the social situation of the family, and demands from them a total change of lifestyle. I would better put my bet on developing regional centers and local, small oncology practices which are capable of providing basic chemotherapy, supportive care and palliative care for end-stage patients. This patient-friendly approach would not only bring care closer to patients but install a network of dedicated oncology professionals who would push up the level of cancer care countrywide and lay the groundwork for broad discussions and resource planning. It goes without saying that this way of treating cancer is more resource-intensive but at the end of the day it is more rewarding.
‘If the patient cannot be cured it does not mean we can’t help him.’ Vera Millionschikova (1943 -2010), founder and director of the first Moscow hospice.
Palliative care is another big issue in our country given that the first hospice was opened only 15 years ago and the term “palliative care” appeared in healthcare legislation only in 2011. Hospices that most often lack outpatient programs are operating mainly in big cities situated in the western part of the country . Palliative care elsewhere is carried out by GPs who are overloaded with the general population and not well trained in palliative care.
although this type of testing is very important for diagnosis and treatment of oligodendroglioma. Another peculiarity of neurooncology care in Russia is that pediatric brain tumor programs seem to be much better organized than adults for historic reasons, not to mention that there is big support from numerous charity foundations that help children with cancer. The majority of charity donations in oncology goes to children, not adults. To me, the fastest way to improve brain tumor care on the whole in Russia (both pediatric and adult) is to reshape the way charity foundations operate, shifting from providing new, fancy but unproven drugs like Avastin for gliomas to more routine but highly needed things like palliative care
coordination, support of local specialists with simple drugs, policy making and education of local medical specialists. Should we change the country rather than changing medicine? Having mentioned all of the above I think that in the long run, only political and structural reforms can improve the quality of healthcare on the whole, and neurooncology in particular, by introducing motivation and competition to the system. Indeed, all these major and minor improvements can only be done in a competitive and motivated environment which is lacking at the moment. Decentralising and fostering competition is what our country and its healthcare needs the most. n
Emerging issues Access to up-to-date molecular diagnostics, which should be done routinely now, is very limited in Russia. For example it is very hard to do 1p/19q chromosome translocation testing outside of the main centers in Moscow and St. Petersburg
Colombian brain tumour symposium From home to Rome.. nearly! Dr Gabriel Vargas reported that a brain tumour symposium at Bucaramanga, Colombia, South America was held on 5th November 2011 and was attended by 130 people, including patients, families, students and medical specialists. It was organised by Capitulo de Neurooncologia y Base de Carneo Asociacion Colombiana de Neurocirugia, with the support of the Faculty of Health Sciences at the Universidad Autonoma de Bucaramanga (Unab), Clinica Carlos Ardila Lulle (FOSCAL). n
Bob Clarke from Bradford (UK) walked 600 miles from his home town to about 100 miles southeast of Calais (France) and raised £1855.00 for the Yorkshire-based charity Brain Tumour Support Across Yorkshire. Bob walked in memory of his grandson, Callum. Bob hopes to continue his fundraising efforts next year and intends to walk all the way to Rome. n
Living and Dying With Dignity ‘Living and Dying With Dignity’, Jennifer A. Jilks General Store Publishing House, Canada (www.gsph.com), ISBN 978–1-897508–11-4. 2008. 260 pps. $24.95 CAD
Above: The cover of Jennifer Jilks’ book features photographs of her parents’ lives together.
UNLIKE the title’s inference, this book is not about assisted suicide or euthanasia whose proponents quite often employ the words “dying with dignity” to advocate for their philosophy. Quite the contrary, this is a detailed book about the painstaking and committed care by a mature Canadian woman for her aged and ill parents, one of whom (her father) died from a brain tumour. The author acknowledges the “healing power of the writing process”, at the same time acknowledging her brush with depression. Obviously, this book was undertaken as part of her self-healing process. Jennifer Jilks was adopted as an infant into a working class family. In 2003 her father suffered a grand mal seizure and was diagnosed with an anaplastic oligoastrocytoma brain tumour. Jennifer complains that she was given no warning about the possible effects of 90
neurosurgery which, in her father’s case, included word difficulty. Nor did she know how to contact his oncologist. At the time she was living and working geographically distant from her parents and was preoccupied with internal work problems in her job as a teacher. This led later to self-recrimination at not accompanying them to their medical appointments. Jennifer expresses gratitude to the Canadian Cancer Society volunteers who drove her parents to appointments and the neighbours who also kept a watchful eye on the ill couple, prompted by the mother craftily “drawing on all favours” to instigate this arrangement. Later, when her father was quite ill, Jennifer came across a resource he had been given by the Brain Tumour Foundation of Canada about the nature of brain tumours and which she found helpful. Jennifer’s mother was trying to protect her daughter from involvement with her father’s illness and consequently she did not comprehend how ill they both were. Later, Jennifer wrote: “Mum denied all that was happening in an effort to not allow it to be”. This is a classic example of denial and unfortunately it is not uncommon. Her mother was angry at her husband’s propensity to sleep, apparently not realising that this was part of the illness. Both parents were insistent about remaining in their own home and rejecting a transfer to a care facility. Jennifer’s mother died from her illness in 2006. At seventy-nine years of age she had complete trust in her doctors and did not care to know the details of her treatment and certainly did not confide in her adopted daughter. Jennifer’s father refused to attend his wife’s funeral, being incoherent and delirious and taken instead to hospital. By this stage Jennifer’s father could not retrieve nouns and refused to legally
permit her to undertake his banking. He was now living in a care facility. The father believed that “nobody cares” and would phone Jennifer at all hours with puzzling statements, such as: “I wanted someone to get band aids in a jar”, which meant “The candies in the jar were gone”. He was suffering from dementia, confusion, and agitation. Jennifer was concerned at the possibility that her father was also suffering from pain, not necessarily from his brain tumour but from the severe arthritis he also experienced. She makes an insightful statement about pain: “There are accepted, non-specific signs of pain: frowning, grimacing, grinding of teeth, fidgeting, bracing, rubbing, striking out, increasing or recurring agitation, poor eating or sleeping habits, sighing, moaning, groaning, decreased activity levels, resisting a particular movement, change in gait or behaviour, or loss of function. Dad had all of these and, in hindsight, was clearly under-medicated”. Jennifer’s father had also lost some of his inhibitions. Referring to a staff member he would say loudly “Here comes the fat one”. It is difficult to know as a third party if all her father’s deficits could be attributed to his tumour or to the ageing process. Jennifer writes: “As my friend, Kristin, said: ‘Pediatrics and geriatrics... not much difference except for body mass’.” Sometimes there were glimpses of the former affectionate and loving father. On one occasion he accidentally banged his wheelchair into her legs and said “Sorry sweetie”. Jennifer’s father’s doctor basically ignored her but she would garner information from sympathetic staff. As her father entered the end of life stage Jennifer established contact with a peer support volunteer from the Canadian Cancer Society and this proved
helpful to her, particularly in discussing how her father might die from his brain tumour, which had recurred in 2006. He died in February 2007 and Jennifer writes that she felt a burden had been lifted. Jennifer comments honestly about her experience in being involved with both her parents’ deaths: “It was a horribly difficult time, and I have not yet fully recovered from advocating for both of my parents”. The final fifty pages of Jennifer’s book summarise current research on caring and ageing as well as her conclusions
about these two aspects particularly in the Canadian context where she lives. This book is not light reading. It describes in great detail the minutiae of a loving daughter’s journey with two obstinate, independent, and strong-willed parents as they approach death. It is a reminder that not all family situations are the same and nor is one’s experience of death, which can be challenging, exhausting and mentally debilitating for the family caregiver. We all aim to experience a “good death”, for ourselves or for our loved ones.
In the concluding pages Jennifer writes: “There are three things I suggest to families regarding their health care: be active, reactive and proactive”. That is good advice and it behoves us to become knowledgeable about the nature and likely trajectory of a disease and what caregiving supports are available to ourselves or our loved ones. I often say at the outset to newly diagnosed brain tumour patients and their families if they seek my advice - “You now need to develop sharp elbows”. n DS
Brain Tumour Research’s workshop
For extra single and bulk copies of this magazine and the Brain Tumour Timeline wallchart, and enquiries about postage and freight costs, please contact email@example.com or Kathy@theibta.org
Sue Farrington-Smith, Director of Brain Tumour Research (UK) said that the group held its annual members’ workshop during 30th October - 1st November in support of “International Brain Tumour Awareness Week”. Here is a photo of the group’s member organisation representatives. n
In the U.S. alone,
600,000 people are living with a Brain T
There are 120 different types of brain tumors. This year, 14,000 people will die from a brain tumor. More than 500 people will be diagnosed today.
There is no one answer. There is one leading resource.
our Foun um
brain tumor diagnosis.
T H A F RIC
BTFSA (Brain Tumour Foundation of South Africa) is a charity trust that has been set up to assist patients, carers and the public with information on brain tumours. It is our aim to unite people affected by a brain tumour in order to engage, encourage and empower patients and their families Call Deirdre Kohler : 27 83 380 3725 www.braintumour.co.za www.deirdrekohler.com
Learn more at www.abta.org or call 800-886-ABTA (2282).
Brain Tumour IBTA ad FINAL.indd 1
4/4/12 3:45:33 PM
Using your NOgIN! By Emma Everingham Clinical Nurse Consultant Neuroscience, Westmead Private Hospital, Westmead, New South Wales, Australia
iane Lear and I, who are both Clinical Nurse Consultants Neuroscience in Westmead, Australia, set up our group “The Neuro-Oncology Information Network” (NOgIN) five years ago as a joint project between the Westmead Hospital and Westmead Private Hospital because we identified a huge need for ongoing support for our brain tumour patients and caregivers. We maintain a database of patients admitted for treatment to our hospitals, coordinate mailouts and run evening information nights with guest speakers. New patients are welcomed at the beginning of each meeting and encouraged to talk casually with other attendees during the break. We also take questions and enquiries by phone/email from patients pre- and post-admission. In the clinical setting we discuss the group with all of our brain tumour patients and their caregivers during their admission and we also provide an information support pack. This is very important to build rapport with patients and encourage them to attend the support group. Guest speakers at our information nights include: neurosurgeons, radiation and chemotherapy specialists, clinical psychologists, radiologists, patient/carer speakers, massage therapists, dieticians and physiotherapists. Based on our evaluations for our group, and for the last two years, we have also run a “Carers Only Night” very successfully. The biggest issue was family members not being able to leave their loved ones to attend. So the idea was great and people really wanted to come but when it came to attending, our numbers were lower than expected so we will re-think what else we can offer. For the last three years we have also run an annual BBQ/raffle fundraising event. 92
Above: Emma Everingham (left), Diane Lear (right), with a NOgIN volunteer helper (centre).
With regard to running a group, facilitators - who ideally are either a social worker, psychologist or nurse - must have current experience and daily interaction with brain tumour patients to truly be able to relate to the issues experienced.
Compassion, organisation skills and a caring approach are also very important. Don’t try to do too much too soon, take it in steps and ensure you have experienced, good quality speakers. RSVP is essential. Try to avoid people just turning up so you can prepare the room and catering adequately. We learn from our experiences. When over 75 people turned up for a meeting in a room which only holds 75 comfortably it was somewhat of a challenge. We had no idea the demand for the topic “Mobile Phones and Tumour Research”, would be so significant. We find that we don’t have an issue with those who have a malignant diagnosis co-existing comfortably in the group with those who have a benign or low-grade diagnosis. We do exclude people with pituitary tumours as their issues are quite specific and often don’t apply to the general group. We are specific to adults too. n
A walk on the Isle of Man A walk was held on 13th November 2011 which was organised by Naseem’s Manx Brain Tumour Charity. The charity was named after Naseem Pishvaie who died from a brain tumour. It seeks to support other people suffering from a brain tumour, and also contributes to research. Walk organiser Gerry wrote on their website: “ It was very muddy, but we got there in the end. Also to those who actually carried on to Peel, “well done guys!”. All the mileage achieved today will go towards the International
Brain Tumour [Alliance] “Walk Around the World” and what a day to hold it, Remembrance Day! Lots of Love, Gerry.” Here is a photo of the 50 walkers, including the obligatory dog! n
• • • •
Brain Tumors Research Association To support neuro-oncological research Soutenir la recherche en Neuro-Oncologie
The Association’s main goal is to improve fundamental, clinical and therapeutic knowledge in the field of brain tumors and to support hospital services.
Son objectif est le progrès de la connaissance fondamentale, clinique et thérapeutique dans le domaine des tumeurs cérébrales.
To act specifically
Programs of HoPe Providing educational and emotional support for families and survivors
The ARTC specially deals with two pathologies : brain tumors and neurological cancer complications. Two research laboratories are devoted to these tasks and are linked to other research institutes over the world. Moreover, ARTC recently decided to support neurooncology training and care in French-speaking Western Africa. L’ARTC s’intéresse aux traitements de deux types de pathologie : les tumeurs du cerveau et les complications neurologiques des cancers.
Association pour la Recherche sur les Tumeurs Cérébrales Groupe Hospitalier Pitié Salpêtrière Fédération de Neurologie – Mazarin 47, Boulevard de l’Hôpital 75013 PARIS
• Scholarships • Patient services • Advocacy • Educational resources
Pediatric Brain Tumor Foundation®
Pediatric Brain Tumor Foundatio curethekids.org • 800-253-6530 Brain Tumour
Inspirational Olympic torchbearers represent the UK brain tumour community with pride THE IBTA salutes these nine members of the UK brain tumour community who have been selected to carry the Olympic flame for the 2012 Olympic Games in London. Tens of thousands of applications for this role were received and 8,000 inspirational people have been selected for this honour. The Olympic flame, carried by the torchbearers, will make its way around the UK during a 70 day journey. The route has been planned so that the flame comes within ten miles of 95% of the population of the UK. Some of the unusual modes of transport for torchbearers include horseback, steam train and even zip wire. All of the people pictured here are either brain tumour patients, family members of a brain tumour patient, caregivers or former caregivers.
ANDY Foote (Solihull, UK). Andy’s young son, Joseph, was diagnosed with an ependymoma brain tumour aged only two and a half. Joseph passed away in 2007 when he was nine years old. Andy fundraises and campaigns on behalf of a brain tumour charity. On being selected as an Olympic torchbearer, Andy said: “It was a real surprise to be selected. I can’t wait for what is sure to be a great occasion and a superb opportunity to raise awareness of the increasing brain tumour problem.” n 94
FIGEN Rawlinson was one of the lucky people chosen to carry the Olympic flame and she is doing so in memory of her son Taylan who was diagnosed with a diffuse intrinsic pontine glioma (DIPG) in 2008 and passed away in 2009. Figen, who is also carrying the flame in honour of other patients and families affected by brain tumours, said: “I was so delighted yet emotional when I received the news that I had been selected by BMW Vines Group. Brain tumours are such a devastating and under-funded disease that leaves families shattered. Watching your loved one and especially your child trying to fight this disease makes you feel so helpless. Seeing Taylan’s bed empty every day and night, not hearing his voice, not being able to cuddle him and always wondering what he would have looked like is a feeling I cannot describe and I do not want anyone to have to go through this pain. We all miss him so much and know he would have been proud of his mummy. We need to find a cure and help save lives.” n
RICHARD Eaton will carry the Olympic torch in the Nottingham area. Richard chairs a local childhood cancer charity as well as serving as a trustee for a brain tumour charity and sitting on his local Bench as a Justice of the Peace. Richard is the eldest of 11 children. His second youngest brother, Edward, age 19, has been living for nine years with the consequences of brain tumour surgery. Richard is married to Ellen and has one son, three year old Matthew. n TASHA Floyd (pictured left, with Mum Shona, right) was diagnosed with a brain tumour at the age of 16 after suffering from bad headaches and dizziness for six months and being originally diagnosed with migraines. She sadly lost her sight due to the tumour but is doing well and studying a music course in college. Tasha campaigns for earlier diagnosis of brain tumours. n
DIAGNOSED with two brain tumours in 2008, 46 year old Daryl Gittins, who is married with three sons, provides support to other patients and their families in South Wales. He is a tremendously successful fundraiser for a brain tumour charity. Also in 2008 Daryl lost the lower part of his left leg due to a blood clot in his artery. But he hasn’t let that or his brain tumours stop him - he was a serious contender for Paralympic cycling and will carry the Olympic torch through Burry Port in southwest Wales. Of his brain tumour journey, Daryl said: “Believe in yourself, do not let people write you off. Stand tall, shake yourself down and hold your head high and get on with life.” n
IAN Meek will help carry the Olympic flame through York, England. Diagnosed with a brain tumour in 1994, Ian’s motto is “When diagnosed with cancer don’t think of the things you cannot do, dream and do the things you can”. Ian certainly walks the walk and talks the talk - he has run 10Ks and half marathons; walked the Yorkshire Three Peaks and also climbed the three peaks of Snowdon, Scaffell Pike and Ben Nevis, earning him the nickname “Three Peak Meek”. Ian’s heroic efforts have raised substantial funds for brain tumour charities. n
HANNAH Jones was diagnosed with a brain tumour at age 15 and will carry the Olympic flame through Hawarden in North Wales. Hannah said: “I have met some amazing and very brave people who have been affected by this disease. I hope that my story has given more people a positive view about the situation and also how being positive can really help you to progress in life. Never give in!” Hannah is also a very impressive fundraiser for a brain tumour charity. n
ED Quinn helps organise a brain tumour support group in Leicester, England and fundraises for a brain tumour charity. His wife, Rita, passed away four years ago from a brain tumour. Ed is one of the 8,000 lucky people to be selected as a torchbearer for the Olympics. Ed said: “Fear, confusion and isolation are just some of the feelings experienced when you know you or someone close to you has a brain tumour. Support groups help to overcome these feelings by providing information, a chance to meet others having a similar experience and an opportunity to relax without worrying about other people’s reactions. They help to provide coping strategies and most important they allow you to be yourself.” n
THIRTEEN year old George Stocker from Wetherby, West Yorkshire, was diagnosed with a brain tumour in 2008 and has raised more than £50,000 for a childhood cancer charity. George, who completed 80 weeks of treatment (which included numerous operations, chemotherapy and radiotherapy) was nominated for the role of Olympic torchbearer by 30 people. In a BBC news interview, George said: “I am quite nervous, the thought of it makes me shiver.” But he also added that he felt “very honoured and excited” about his selection. n Brain Tumour
Brain tumours are a complex speciality An interview with Dr Salvador Villa Department of Radiation Oncology, Catalan Institute of Oncology, H. Universitari Germans Trias, Badalona, Spain
IBTA: Where did you spend your childhood? SV: I was born in Barcelona, the Capital of Catalonia in Spain. But I spent all my childhood in El Masnou, an original fishing village in the northern part of Barcelona where I currently live with my wife and my two sons. I enjoy the village, the beach and the Mediterranean Sea. I used to play football and basketball and I went for secondary school to a Catholic centre in Badalona, the home of my favourite basketball team, the Joventut de Badalona which, in 1994, achieved its best success winning the European Championship. A characteristic of living and growing up in a location like Catalonia is that we have the advantage of speaking two languages (Catalan and Spanish) and knowing others, such as French. IBTA: Did you come from a family environment that had a connection with medicine or research? SV: Absolutely not. My father was a chemist. For a long time, he and my mother had commercial perfumery shops. I decided to focus on medicine from a very young age, when my grandmother died of Hodgkin’s Disease. However, all my brothers and sisters are involved in teaching, pharmacy, chemistry and research. IBTA: What attracted you to medicine and later to the brain tumour area? SV: I was attracted to medicine because of my grandmother’s disease. I was very close to her. But I was also attracted because of some friends and typical TV comedies about hospitals and doctors. I trained in radiation oncology in the Bellvitge Hospital near Barcelona Airport and my doctoral thesis was on malignant gliomas, a topic choice which was influenced by Dr Francesc Graus, former president of the European Association of Neurooncology (EANO) and a 96
himself/herself but also his/her relatives and the relationship with other specialists in charge of patients with brain tumours. It is not easy to deal with the reality of a brain tumour diagnosis and prognosis but it is unavoidable. I think, though, that I transfer good feelings to my patients and families and they understand the situation and the processes. However, when we get a success or solve a patient’s problem I believe our satisfaction is better than in other medical specialities.
Above: Dr Salvador Villa who is based in Badalona, Spain
good friend of mine. After that, I became a member of the Radiation Oncology Group of the European Organisation for Research and Treatment of Cancer (EORTC) and, ultimately, a member of the EORTC Brain Tumour Group. Dr. Graus, some other colleagues and I founded the Barcelona Glioma Study Group (GEGB) 20 years ago. I understand the broad coverage of neurooncology in which different specialists must know the management of brain tumours using radiation, drugs, imaging or palliative care. IBTA: How do you relax? Do you play music, go for walks, sail a boat? Do you have a hobby? SV: I love the sea and I walk along it at the weekends. I am also a member of a mountain club for trekking and we spend twice a month going out to the mountains. I also love reading novels and poetry, and write for my own pleasure. IBTA: How do you cope with the emotional and psychological challenges to you personally arising from your work? SV: Our speciality is not easy. It is very complex, taking into account the patient
IBTA: Do you anticipate any significant breakthrough in brain tumour therapies in the next ten years? If so, in what area? SV: In the future - although I can’t put a time scale on it - some new approaches in brain tumour treatment will be seen particularly focussing on specific subgroups of patients with the same pathology. Patients with the same molecular biology will benefit from specific therapies (drugs, radiotherapy, vaccines) but these treatments will not be suitable for everyone in the general brain tumour population. Work to date in malignant glioma has been important and will serve as a basis for future treatment. However, I’d like to believe that some good news will be announced in the not-too-distant future. IBTA: Can you tell us about your work with meningioma patients? SV: Meningioma treatment is one of my speciality fields. We are treating these patients with sophisticated radiation techniques (without surgery) that give excellent results and local control for a long time without sequelae. Regarding the specific group of malignant meningiomas we are involved in, we have a very important EORTC trial using high dose radiation therapy in the hopes that this approach will improve current results. n
The new leaders of the Belgian brain tumour organization Werkgroep Hersentumoren THE Belgian brain tumour organization Werkgroep Hersentumoren (WGHT) has announced that its new President will be Lia Le Roy who will be supported by the newly-appointed WG-HT Vice-President Betty Ryckaert. Lia succeeds Frank Boeye, founding President of WG-HT. Unfortunately, Frank’s brain tumour has recurred and he has stepped down from the leadership of the organization. Both Lia and Betty have worked with Frank for many years. Lia will be occupied with the international and European connections, and the
Above left: Lia Le Roy, President of Werkgroep Hersentumoren in Belgium Above right: Werkgroep Hersentumoren’s new Vice-President, Betty Ryckaert
information for and contact with patients and carers. Betty will work on issues
relating to the Federal and Flemish political arena. Both will be supported by several members of WG-HT and by its scientific support group managed by Dr. Paul Meijnders. Paying tribute to Frank Boeye’s Presidency, Lia and Betty said: “We regret that Frank can no longer continue as WG-HT President. But we would like to express our deepest thanks to Frank for the work he has accomplished for a better life for brain tumour patients in Belgium, and the pioneering role he played in awareness-raising and advocacy for those patients.” n
Celldex is pleased to support the IBTA in its mission to provide information, encouragement and hope to brain tumor patients worldwide.
A son’s brain tumour diagnosis and a mother’s story ‘Dance at my funeral. Dan Steven: a living prophet in a dying age’. Jan Klooster. Guardian Books. Canada. 2011. ISBN 978-1-55452-672-7. Copies available from www.essencebookstore.com. $20 US/CDN. 320 pps
Above: The powerful cover of Jan Klooster’s book
THIS is a book written by a Canadian mother, Jan Klooster, about the life of her son Dan Steven who was diagnosed in 1999 as a 23 year old with an anaplastic astrocytoma and who died in 2002. The title of the book may sound macabre but it is taken from a faith-filled song written by Dan four years before his diagnosis. A CD which includes this song is part of the book. I first came across the author, Jan Klooster, when my own wife Margaret was diagnosed with a glioblastoma in 2000 and I joined an email brain tumour discussion group of which she was a member and which included people from the USA, Canada, the UK, Australia, and other countries. Many of the group members had come looking for answers and support and Jan found particular help from a transnational 98
group of women, and one man, who were in a similar situation, forging bonds that lasted long after the diagnosis of a loved one which had prompted them to become part of each other’s lives. I did not hear of Jan again until she sent a review copy of this book to me in 2011 via mutual friends from Canada. While some people might rail against the “evils of the Internet” they remain oblivious to the small, tightlyknit communities that it has spawned. Nowhere is this more important than in the brain tumour community where patients and their caregivers are stumbling around looking for support and understanding from people in a similar situation to themselves. Often it is the caregivers and family members who seek this support, less so the patients themselves who, like Dan Steven, did not care to talk about his brain tumour nor did he feel the need to participate in any local support group meetings. Dan Steven, according to his mother, was a troubadour and a prophet, with a deep sense of faith who cared for others. He busked around Canada and the USA, singing and writing songs. Jan Klooster has based the story of her son’s short life on his songs, diary notes, the recollections of others, letters and communications from friends, and messages from the email discussion group. The book deals with Dan’s early life, his diagnosis, the treatments he underwent, the family’s journey to Israel, Dan’s journey to Newfoundland, and his valiant efforts to simply be who he was and to not let a brain tumour get in the way.
The book also poignantly conveys a mother’s anguish at being forced on this unwelcome journey. It chronicles her initial ignorance, her attempts to become knowledgeable about brain tumours, her unsuccessful efforts to convince Dan’s neurosurgeon (Dr Rolando Del Maestro) to operate (which she later acknowledges was a wise decision on his part), and her struggles to respect her son’s independence as he deteriorates and more deficits appear. When the reality of Dan’s diagnosis struck home she wrote: “It was as if an arrow had been loosed from afar, stroked the midnight light, and thudded straight into my heart”. This fear remained with her. The following is an excerpt from an email Jan wrote to “Sandie”, whose daughter Jennifer had the same tumour as Dan’s and was also in her early twenties. It conveys very accurately the fragile and emotional environment in which all caregivers live: “With brain tumours, when remission comes, it’s not like our battle is over. We know too much, have read all the recurrences, have heard all the statistics. We know we will be in this storm again sometime. Just when will be a surprise. Maybe when we let it go, slack off a bit, start to think it isn’t coming back, there it will be. More symptoms, bad MRI, recurrence - and the fight will start again. Yet this time we know what it is like, and we don’t think we will have the wherewithal to go through it again. “All this is going through our brains constantly, and we’re jerked back and forth. We are grateful beyond belief for treatments that have worked. We are
grateful for the lives of our children. We are scared that things will come back. We are told to be happy, that things are looking good, but we know that will not be the case forever. We just don’t know how long. One year? Three? Ten, if we’re really, really blessed? If there is a miracle. “How do we tell someone who is not in this position?” Sandie’s daughter died just three months before Dan. The book contains the words of Dan’s many songs and includes photos of Dan as he grew up and enjoyed life with his friends.
Tell the IBTA about your 2012 International Brain Tumour Awareness Week activities. Contact firstname.lastname@example.org or email@example.com
This is an honest account of a mother’s journey with her son as he tried to continue his life with a brain tumour. Those who have undertaken a similar journey might obtain endorsement for their own experiences. Those who have just commenced this journey might obtain valuable insights of the challenges that could be up ahead. n DS
International Brain Tumour Awareness Week Activit y in Toronto Peter Bordignon from the Joe Di Palma Brain Tumor Foundation in Toronto (Canada) advised that the Foundation held a “Carnival in Venice” on 4th November, with the funds raised going to support the Pencer Brain Tumor Centre at the Princess Margaret Hospital. n
Worcestershire Brain Tumour Support Group Rosemary Wormington reported that the Worcestershire Brain Tumour Support Group (UK) did their annual walk on Sunday, 2nd October at Hanbury Hall. There were 17 people plus a dog and each human participant walked three miles, donating a total of 50 miles to the “Walk Around the World for Brain Tumours”. Rosemary also added: “We had a new couple come who were so pleased to find a group and loved every minute of it.” n
Supporting organisations (149) for the IBTA’s 2011 awareness-raising activities ACT Brain Tumour Network (Australia) n Accelerate Brain Cancer Cure n Adult Brain Cancer Support Association of South Australia n Ali’s Dream (UK) n Andrew McCartney Trust Fund for Brain Tumour Research (UK) n Angels Among Us Walk (Duke University - USA) n
Asociacion Española de Afectados por Tumores Cerebrales (ASATE) n Association Léa Princesse Éternelle (France) n Association
of Neuro-Oncology Nurses (ANON) n Astro Fund (UK) n Australian Genomics and Clinical Outcomes of High Grade Glioma (AGOG) n Australian Pituitary Foundation n Austrian Society for Neurooncology n Bellaria-Maggiore Hospital (Italy) n Blackwood 8 (Australia) n Brad Kaminsky Foundation for Brain Tumor Research (USA) n Brain Candy Project (USA) n b.r.a.i.n.child Foundation (Canada) n BrainLife.org n Brain Tumor Fund for the Carolinas (USA) n Brain Tumour Action (Scotland) n Brain Tumour AhoyHoy (Australia) n Brain Tumour Alliance Australia (BTAA) n Brain Tumour Foundation of Canada (BTFC) n Brain Tumour Foundation of India n Brain Tumour Research (UK) n Brain Tumour Support and Information Across Yorkshire (UK) n Brain Tumour Support Group (Cancer Council Queensland, Australia) n Brain Tumour Support Group (St Thomas’ Hospital, London) n Brain Tumour UK n Brains Together for a Cure n Brainstrust and the Big Wight Matter Walk (UK) n Brainwaves Brain Tumour Support Group (UK) n Bratislava Group for Brain Tumours (Slovak Republic) n Brian Bedell 2-Young Foundation (USA) n British Acoustic Neuroma Association n
British Neuro Oncology Society n BT Buddies (UK) n California Brain Tumor Association n Canadian Alliance of Brain Tumour
Organisations (CABTO) n Canadian Brain Tumour Consortium n Cancer 52 (UK) n Cancer Council Australia n Canterbury Blood and Cancer Service (New Zealand) n Faculty of Medicine, Oncology Institute (Capa, Istanbul) n Cardinal Santos Medical Center Brain and Spine Tumor Center n Cellular & Molecular Neuro-Oncology Group, University of Portsmouth (UK) n Central Brain Tumor Registry of the United States (CBTRUS) n Central New Jersey Brain Tumor Support Group (USA) n CHANCE (CHildren AgaiNst CancEr) Association (Lebanon) n Charles Warren Brain Tumor Awareness Foundation (USA) n Childhood Brain Tumor Foundation (USA) n Chinese University of Hong Kong - Brain Tumour Centre (Brain Trek) n Chris Elliott Fund for Glioblastoma Brain Tumor Education, Awareness, Advocacy and Research (USA) n Clowns in the Sky (UK) n Collaborative Ependymoma Research Network (CERN - USA) n
Comprehensive Brain Tumor Program Mount Sinai Hospital, New York (USA) n Cullather Brain Tumor Quality of Life Center (USA)
Cyprus Brain Tumour Association n Delhi Neurological Association (India) n Dr Marnie Rose Foundation (USA) n ECCO - the
European CanCer Organisation n Ed Evans Foundation (UK) n Edinburgh Centre for Neuro-Oncology (UK) n European Association of Neuro Oncology (EANO) n European Federation of Neurological Associations (EFNA) n European Organisation for Research and Treatment of Cancer Brain Tumour Group (EORTC Brain Tumour Group) n European Organisation for Rare Diseases (EURORDIS) n Fissure (UK) n Florida Brain Tumor Association (USA) n Genetic Alliance (UK) n Gentle Giant (UK) n Gerry and Nancy Pencer Brain Tumor Centre (Canada) n Glioblastome Association Michele Esnault (GFME - France) n Gosling Foundation (UK) n Gray Matters Foundation (USA) n Grey Matters (Australia) n Hawktober (USA) n Hjernesvulstforeningen (Norway) n Home to Rome Walk (Bob Clarke - UK) n Il Fondo di Gio ONLUS (Italy) n Indigo Press n Irene ONLUS (Italy) n Irish Cancer Society n Italian Association of Neuro-Oncology (AINO) n Joe Di Palma Brain Tumor Foundation (Canada) n Joseph Foote Trust (UK) n Kartu Lengviau (Lithuania) n Kortney Rose Foundation (USA) n League Against Cancer County Primorsko-goranska (Croatia) n Legacy Brain Foundation (USA) n Levi’s Star (UK) n Mark Linder Walk for the Mind (USA) n mASS Kickers (USA) n Meagan’s Walk (Creating a Circle of Hope - Canada) n
Michael G. Belz Foundation (USA) n Michael Quinlan Brain Tumor Foundation (USA) n Musella Foundation n Naseem’s Manx
Brain Tumour Charity (UK) n National Brain Appeal (UK) n National Brain Tumor Society (USA) n National Institute of Mental Health And Neurosciences (India) n Neuro-Oncology Information Network (NOgIN) - Westmead Hospital (Australia) n Neurooncology Section of the Asociacion Colombiana de Neurocirugia (Colombia) n Neuro-oncology Service - Kings College Hospital London (UK) n
Neuro-oncology Working Group of the German Cancer Society (NOA) n Newro Foundation (Australia) n Nicholas Connor Institute
(USA) n Nick Gonzales Foundation for Brain Tumor Research (USA) n One More Day Inc (USA) n Paul Keeting Vacation Run 2011 (Canada) n Paul Levitt Foundation (UK) n Pediatric Brain Tumor Foundation (USA) n Pediatric Brain Tumor Network of Japan n Philippine Alliance for Brain and Spine Tumors Inc n Philippines Brain Tumour Alliance n Podari Zhizn Charity Foundation (Russia) n
PRP Diagnostic Imaging n Preston Robert Tisch Brain Tumor Center at Duke University (USA) n Queens Centre for Oncology and
Haematology, Hull (UK) n Rare Disease UK n Regina Elena National Cancer Institute (Italy) n Run Over Cancer (ROC - USA) n Robert H. Lurie Comprehensive Cancer Center of Northwestern University (USA) n Samantha Dickson Brain Tumour Trust (SDBTT - UK) n
Scottish Adult Neuro-Oncology Network (SANON - Scotland) n Society for Neuro-Oncology (SNO) n Sontag Foundation (USA) n
Sophie’s Wish (UK) n South American Glioma Network (SAGN) n Southeastern Brain Tumor Foundation (USA) n Spanish National Registry of Childhood Tumours (RNTI-SEHOP) n STOPhersentumoren.nl (Netherlands) n Students Supporting Brain Tumor Research (SSBTR - USA) n Svenska Hjarntumorforeningen (Sweden) n Sydney Neuro Oncology Group (Australia) n Tali’s Fund (Canada) n
Teenage Cancer Trust (UK) n Texas Comparative Neuro-Oncology Program (USA) n Valentis Cancer Hospital Meerut (India) n
Victorian Racewalking Club (Australia) n Vidyasagar Institute of Mental Health & Neurosciences No. 1 (India) n We Can Pediatric Brain Tumor Network (USA) n Werkgroep Hersentumoren vzw (Belgium) n Western North Carolina Brain Tumor Support (USA) n Will Abbott Mt Apo Climb (Philippines) n Worcestershire Brain Tumour Support Group (UK) n Zimbabwe Brain Tumour Association n
Sincere thanks to the above organisations for their support of the 2011 Walk Around the World for Brain Tumours and the International Brain Tumour Awareness Week
For a not-for-profit organisation, the IBTA has an unusual attitude towards donations. We don’t wish to receive any funds from organisations who support the “Walk Around the World for Brain Tumours” and the “International Brain Tumour Awareness Week” because it is crucial that these are directed to local, national and regional brain tumour support or research organisations in your own country. However, as a completely voluntary organisation with no paid staff we do need some funding for our work and our publications. So we welcome offers of funding from companies and philanthropic organisations and have a detailed sponsorship policy on our website that covers that subject. Enquiries should be directed to: firstname.lastname@example.org If they wish to, individuals can also make donations directly to us via the on-line facility on our website www.theibta.org but please do not neglect your local or national brain tumour support groups.
Students Supporting Brain Tumor Research (SSBTR): helping to beat brain tumors by funding innovative research THE International Brain Tumour Alliance has had a long-standing relationship with a group of dedicated and amazing students and their mentors in Phoenix, Arizona (USA). Students Supporting Brain Tumor Research (SSBTR) was founded in 2002 after the devastating deaths from brain tumors of three local high school students. SSBTR was the brainchild of teacher Steve Glassman who, recognizing that brain tumors are the number one cancer killer in teenagers, set up a group to fundraise for research into this disease. The initiative also provides students with the opportunity to become community leaders and philanthropists through experience gained working with SSBTR. Through their annual “Walk-A-Thons” which attract thousands of students and to date have raised over US $1.7 million - SSBTR donates walked mileage to the IBTA’s awareness raising initiative, “The Walk Around the World for Brain Tumours”. The funds raised by SSBTR are directed to US-based brain tumor research and support organisations. The IBTA has also published a series of articles about this inspirational group of young people in the last two issues of its magazine, Brain Tumour. The value of mentoring and volunteering A small number of very committed and experienced adults is also connected with SSBTR. They provide continuity and mentorship to the SSBTR students. These adults guide the students in event planning, grant writing, public relations and planning meetings. Wendy Kaye, a Phoenix paediatrician who is the President of SSBTR, is delighted to lend her expertise to this project and has worked with SSBTR for ten years. Dr Kaye herself knows the positive value and crucial impact of volunteering. Every summer, Wendy travels to Ecuador with her husband Marty (also a paediatrician) on a medical mission. Here they help look after children who otherwise would have no 102
access to paediatricians and medical care. Tragically, Wendy and Marty lost their own daughter, Lauren, to a brain tumor when Lauren was just 17 years old. Wendy said: “Our daughter’s final request of us was to devote ourselves to finding a cure for brain tumors and thereby spare others the same ordeal.” Supporting innovative research Dr Adrienne Scheck, Principal Investigator in Neuro-Oncology Research and Neurosurgery Research at Barrow Neurological Institute (see http://www.thebarrow.org/index.htm) in Phoenix, Arizona is also involved with SSBTR and mentors students attached to this initiative. Adrienne Scheck’s laboratory at Barrow is supported by SSBTR funds. Adrienne said: “This year in the United States, over 22,000 people will be diagnosed with a primary brain or spinal tumor. Of these, more than 13,000, many of them younger than 21 years old, will die of their disease. New treatment modalities are critical in the battle against cancer. Our focus in the [Barrow] Neuro-Oncology Research
Above. Students Supporting Brain Tumor Research (SSBTR) fellow Kathryn (Katie) Fenton (left) presented her original research on the ketogenic diet at the 2011 SNO meeting. Katie is pictured here with Dr. Adrienne C. Scheck (right).
Laboratory is on brain tumor therapy and therapy resistance. Our work consists mainly of translational research to develop novel adjuvant therapies for the treatment of brain tumors. We also use various molecular and molecular genetic techniques to investigate why current therapies sometimes fail.” Wendy Kaye added: “Dr. Scheck has become a most valued partner in our efforts toward achieving that goal. It has truly been an inspiration to work with such an
Above. Students and staff from Dr Adrienne Scheck’s Neuro-Oncology Research Laboratory attended the 2011 Society for Neuro-Oncology annual meeting. Front row, left to right - Shane D’Sa (high school student researcher); Tyler Haeberle (former high school student researcher, now college freshman). Standing, left to right - Kathy Oliver (IBTA); Eric Woolf (post-undergraduate volunteer researcher - now SSBTR fellow); Mohammed Abdelwahab, (technician); Dr. Scheck; Kathryn (Katie) Fenton (SSBTR fellow).
outstanding and dedicated scientist as Dr. Scheck. She has generously devoted much of her spare time educating the SSBTR students and adults about the complexities of brain tumors and her current research.” Recently, SSBTR funded a postundergraduate Fellow in Dr Scheck’s laboratory, Kathryn (Katie) Fenton. Katie presented her original research at the 2011 Society for Neuro Oncology (SNO) meeting in California. Her presentation was entitled: “Effect of the ketogenic diet on protein expression of the JIP scaffold proteins”. The neuro oncology research laboratory at Barrow has been working on metabolic alteration as an adjuvant therapy for glioblastoma multiforme. With the help of funding from SSBTR they have shown that the metabolic alteration caused by the use of a ketogenic diet can extend survival in a mouse model of malignant brain tumors. Furthermore, this metabolic alteration potentiates the anti-tumor effects of both radiation and chemotherapy. Pre-clinical studies using a human medical ketogenic diet (KetoCal®, Nutricia Advanced Medical Nutrition) showed the same results with
Gray Matters Foundation Above. Dr. Adrienne C. Scheck and Kathy Oliver, IBTA Co-Director, in front of the IBTA booth at the SNO 2011 conference..
an even greater effect on survival. The mechanism(s) through which this occurs is under investigation. Adrienne Scheck is a firm believer in the value of mentorship - so much so that at the SNO meeting in California, she brought along four others of her young colleagues from her laboratory (in addition to Katie) to show them what a neuro oncology scientific meeting was like and to give them the opportunity to learn more about this challenging field. These students actively participate in the ongoing research in Dr Scheck’ laboratory. n
Lanette Veres from the US Gray Matters Foundation in the United States wrote that she planned to have a Gray Matters table at the Rare Affair Beer for Brains activity in Scottsdale, Arizona on 5th November 2011. Here is a photo of Lanette who is a brain tumor survivor and established the group in 2007. n
THE DUTCH BRAIN TUMOR FOUNDATION
Raising awareness and money for brain tumor research
Hoofdstraat 88 | 3972 LC Driebergen | The Netherlands
Communicating with sick children ‘Staying Connected: a Guide for Families When a Sick Child has Trouble Communicating’. Author: Ceilidh Eaton Russell, Co-authors: Eric Bouffet, David Brownstone, Caelyn Kaise. BrainChild 2011. Canada. 72 pps. Spiral. The book can be downloaded as a PDF from this webpage: http://www.sickkids.ca/Brainchild/Resources-and-Links/index.html Enquiries to: Ceilidh Russell (email@example.com)
Above: The cover of ‘Staying Connected’
THIS short (72 page), spiral-bound guide has been produced with the assistance of the Canadian advocacy group b.r.a.i.n.child, which is associated with the SickKids Hospital in Toronto, Canada. Although b.r.a.i.n.child grew out of the experience of parents who cared for a child with a brain tumour, this resource is relevant to all those who might deal with a sick child or teenager where there are communication problems. The content is drawn on the authors’ own experiences and those of fourteen families who have cared for a sick child. In addition to sections on resources and useful tools there are four main chapters: “A New Approach to Communication”, “Communication Strategies”, “Communication Topics”, and “Caring for Your Children and Yourselves”. Each chapter commences with a synopsis of “Quick 104
Tips” which are linked to the relevant page number in the subsequent text. The book is packed full of useful tips and strategies with the parents’ insights highlighted in bold font. Here are several examples: n practice more than one way of communicating without words n start by asking broad questions and then move to more specific questions n much information is obtained facially n in using tools include words as well as pictures or symbols n some children could make the shape of words with their mouths n talk about and practise a range of communication strategies n children need to be reassured that all of the feelings they have are natural n looking through photo albums and talking about the memories you share (and will share) can offer tremendous comfort One of the cleverest examples from a parent was a strategy to help her child take her medicines when she was reluctant to do so: “We had a bag of marbles .... they were all very original. She would pick marbles that would symbolise the pills that she would have to take. Other marbles would (represent) treats. She’d put her hand in (the bag), mix them all up and pick out a marble. Two out of three times it would be a treat and one out of three times it would be a pill. We’d just keep on playing that game until she was done with all her pills”. The “Tools” chapter contains a useful yes/no bubble chart which guides the parent/carer/health professional towards different layers of precision in identifying what might be troubling the child. It also includes face drawings to illustrate the
degree of pain being experienced and eggshaped faces to express different emotions. The book contains a practical section on the difficult area of “the future, spirituality and death”. The book is highly recommended. n DS
UK parent Sean Connolly developed an iPad app “Share My ABCs” for his three-year old daughter Iris who suffered memory loss after an operation for her brain tumour. It can be purchased online in the App Store for AUD $5.49 or equivalent in other currencies. It enables users to learn word creation by tracing outlines on the screen which can then be sent to Facebook or by email. The authors of the Canadian book reviewed here caution parents not to force children to use a communication tool that they do not want to use. A child who has not previously used an iPad or tablet computer might find it quite challenging to be catapulted into these forms of high tech but, on the other hand, some children might surprise with their dexterity and capacity to learn new technology.
Raise awareness of the challenges of brain tumours - plan an event for International Brain Tumour Awareness Week 2012 (28th October to 3rd November)
The Brain Tumour Patients’ Charter of Rights Introduction: There are a number of documents dealing with patients’ rights, some of which touch on the rights listed here. But this Charter has been drafted from the point of view of the brain tumour patient with particular consideration for the difficulties which sometimes arise in the brain tumour journey. The IBTA has sought to ensure that the Charter will have worldwide relevance but we are mindful that many countries lack basic health facilities and the specialists and facilities relevant to the treatment of brain tumours. The Charter therefore represents an aspirational ideal which we should work towards. While asserting our rights we acknowledge that no rights can exist in human society without responsibilities. n
1. My diagnosis and prognosis should be conveyed to me with accuracy and in a compassionate manner, and preferably by an experienced clinician or specialist. I have the right to ask questions and receive appropriate answers at any point. I have the right to an interpreter if one is available. 2. I have the right to maintain hope and to be supported in that hope by my medical team. 3. I have the right to receive a correct diagnosis and treatment in a timely manner. I have the right to be included in the decision making process for my care. 4. I have the right to access the accepted standard of care in my country, no matter my age or ethnicity. 5. My option to access care will be based on need, and not my ability to pay for it. 6. I have the right to be told by my doctor about all available relevant treatments if he/she is aware of them in my country of residence, whether they are reimbursed by my country’s national health system or by my private medical insurance, or not. 7. I have the right to receive treatment and medication to relieve nausea, seizures, and brain swelling in particular, and other symptoms.
11. I have the right to be provided with the name and contact details of a staff member at my treating facility who may be able to answer urgent questions at times other than scheduled consultations. 12. I have the right to be given copies of all my medical records, including radiology reports, pathology reports, both histopathology and genetic analysis, and digital copies of all my scans if that process is available. If I have donated tissue or any other biospecimen for research or clinical trial purposes I have the right to receive available, easy to understand information about the genetic characteristics of my tumour should I wish to have that information. 13. I have the right to express my opinion on the level of care that I receive at an institution without fear of retribution, and will be given information on the means of expressing this opinion to management level staff. 14. I have the right to ask that my brain tumour is properly registered in my country’s cancer registration records, whether it is benign or malignant. 15. I have the right to be told about relevant clinical trials available in my current treatment facility and offered a place if I meet the inclusion criteria, or be directed to the contact details for a trial taking place elsewhere to which I might be suited.
8. I have the right to be accompanied to my appointments by a family member or caregiver of my choice who may help me recall all that is discussed. I have the right to take notes and/or record the proceedings.
16. I have the right to further opinions, including the right to be informed by a specialist if he/she believes they do not have the skills necessary to perform an operation, or administer a therapy, and to be given the name of another specialist or treatment facility from whom and from where such skills will be available.
9. Either my or my legal guardian’s informed consent is required prior to any treatment procedure. I will be informed if clinicallyrelevant delays in my treatment are expected and will be informed of alternative service providers who may be able to provide services at an earlier time.
17. I have the right not to be discriminated against in my community or my workplace because I have a brain tumour. However, I acknowledge that my brain tumour might render me unable to perform employment or tasks of which I was previously capable.
10. I have the right to multidisciplinary care, which may include apart from my medical team’s help - support from other specialists and information about relevant support groups.
Distributed by the International Brain Tumour Alliance (IBTA) www.theibta.org Enquiries: firstname.lastname@example.org Brain Tumour
The neurosurgeon who was inspired by her own mother’s cancer journey An interview with American neurosurgeon Dr Linda Liau Professor & Vice Chair, UCLA Department of Neurosurgery, David Geffen School of Medicine at UCLA, Los Angeles, California, United States IBTA: Where did you spend your childhood? LL: I spent my childhood in Southern California, about ten miles from Disneyland. I went to Whitney High School in Cerritos, California (currently ranked the #3 high school in the United States by U.S. News & World Report). IBTA: Did you come from a family environment that had a connection with medicine or research? LL: No, nobody in my family had anything to do with medicine or research. My father was a Slavic languages major in graduate school and initially worked as a Chinese-Russian translator. When the Cold War ended, he went into real estate in Southern California. My mother worked at a bank, and my sister is a lawyer. IBTA: What attracted you to medicine and later to the brain tumour area? LL: While in college at Brown University, I worked as a research assistant in a medical laboratory in order to help pay my tuition. I became fascinated with the area of medical research, so went to pursue a medical degree at Stanford University. While at Stanford, I initially worked with a neurologist, Dr. Stephen J. Peroutka, who attracted me to the field of neuroscience research. During my clinical rotations at Stanford, I met Dr. Frances Conley (one of the first women neurosurgeons in the United States), who encouraged me to pursue a career in neurosurgery, although there were still relatively few women neurosurgeons at the time. Then, during the middle of my neurosurgery training at UCLA, my mother was diagnosed with a metastatic brain 106
Above: Dr Linda Liau with her daughter Bianca
tumor. She eventually died of the cancer, and it was her diagnosis and death that made me very passionate about trying to find better treatments for brain tumor patients. I went back to graduate school to get a Ph.D. degree in molecular neuroscience, so I could pursue basic research specifically in the brain tumor area. IBTA: How do you relax? Do you play music, go for walks, sail a boat? Do you have a hobby? LL: I have a wonderful husband (who is also a neurosurgeon), and two pre-teen children. Living in Southern California, we are very close to the beach, so I like to go for walks, bike ride, or roller skate along the beach. My kids and I also like to go for hikes or bike rides in the mountains. In the wintertime, we all like to go skiing and ice skating. Also, being so close to Hollywood, we enjoy going to watch movie premieres, when possible. IBTA: How do you cope with the emotional and psychological challenges
to you personally arising from your work? LL: Dealing with brain cancer patients on a daily basis certainly poses emotional and psychological challenges. However, I really gain a great deal of inspiration and hope from my patients. For the most part, I have found my patients to be wonderful and courageous people, who really try to make the most out of each day. Sometimes, when my work gets busy and overwhelming, I stop to reflect and empathize with my patients, which really helps me put everything into perspective. Ever since my mother’s death, I’ve always felt that part of my purpose in life is to help other cancer patients; and it is that sense of purpose that helps me cope with the challenges arising from my profession. IBTA: Do you anticipate any significant breakthrough in brain tumour therapies in the next ten years? LL: Yes, just as there have been several advances in brain tumor therapies over the last decade, I anticipate that there will be significant breakthroughs in brain tumor therapies in the next ten years. With the advances in molecular genetics and next generation genomic sequencing, I think that we will move to more “personalized” therapies based on the molecular genetic signatures/ classifications of primary brain cancer and other brain tumors. We will hopefully be able to figure out which patients may respond better to novel treatment approaches (i.e., immunotherapy, gene therapy, and/or targeted molecular agents), and which approaches would work well in combination with each other.
I think that we will move away from the shotgun approaches of traditional radiation and chemotherapies, and the “hit or miss” approach of current clinical decisionmaking. Rather, with real-time molecular diagnostic information, treatments for brain tumors in the future will likely be more rational, synergistic, and tailored for individual patients. n
‘Living with a Brain Tumour’ book promoted Lynne Barty of the long-established Brain Tumour Action (BTA) organisation in Scotland said that the group promoted a new edition of its “Living with a Brain Tumour” booklet during the “International Brain Tumour Awareness Week” which was held in 2011 from 30th October to 5th November. The booklet can be downloaded from the BTA website at www.braintumouraction.org.uk n
A spring in their step -
the National Brain Tumor Society’s awareness-raising walks Catherine Sumner from the National Brain Tumor Society in the USA wrote: “Over 7,200 participants united in the fight against brain tumors in cities across the United States for the National Brain Tumor Society’s five spring walks [in 2011]. Decked out in team T-shirts, hats, and the occasional costume, the spirited [participants] contributed an incredible 35,665 Kms to the IBTA “Walk Around the World for Brain Tumours”. The inaugural New York Brain Tumor Walk raised nearly $300,000, while the crowds in San Francisco raised a record-breaking $720,000, contributing to the 2011 walk fundraising total of more than $1.5 million. Proceeds from these
walks benefit the National Brain Tumor Society.” Here are photos of two of the walks. n
Above: Start and finish line at the Denver Brain Tumor Walk in Denver, Colorado, USA
Above: Participants enjoy a sunny day at the “Get Your Head In The Game Brain Tumor Awareness Walk” in Wilmington, Delaware, USA
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L INTERNATIONA BRAIN TUMOUR E NC ALLIA
www.theibta.org Brain Tumour
What you don’t know won’t hurt you... By Kathy Oliver, Co-Director, International Brain Tumour Alliance and Patient Issues Section Editor, European Association of NeuroOncology Magazine
WHAT you don’t know won’t hurt you... ...Or will it? Each year, 200,000 people worldwide develop a primary malignant brain tumour. Although there are no statistics to show it, some of these people - as well as some of the tens of thousands of others who are diagnosed annually with low grade, benign and metastatic brain tumours - will want to know everything about their disease. The big picture, the truth and nothing but the truth. Others won’t want to know. In their paper on Psychosocial and supportive-care needs in high grade glioma, the authors Catt, Chalmers and Fallowfield state: “Active information seeking is an integral part of coping strategies for both patient and their relatives.” 1 It is the strong belief of some brain tumour patients, caregivers and advocates that patients must have as much information as possible about their disease, its genetic characteristics, existing treatments and emerging experimental 108
approaches if they are to make truly informed choices about their care. What you don’t know can hurt you, they argue. A fledgling pilot project in Britain has the potential to arm brain tumour patients with an unprecedented level of knowledge. It is a patient information portal which will give patients free access to data about their care held by the UK National Brain Tumour Registry (UK NBTR). Dr Jem Rashbass, Director of the UK NBTR, said: “The approach we propose will be incremental and designed to strengthen the relationship and deliver considerable benefits for both patients and their clinical teams. A key element of the brain tumour registry pilot will be to ensure that the technology, processes and systems can easily be scaled to cover all cancer sites.” Relying heavily on health information technology (“HIT” is “increasingly viewed as the most promising tool for improving the overall quality, safety and efficiency of the health delivery system”2), this potentially transformative project will give brain tumour patients pioneering access to aspects of their datasets. These datasets generally include full text pathology, multi-disciplinary team data, Patient Administration System information (“PAS” data relates to hospital stays and activity) and some imaging. There is also data on radiotherapy, PET-CT imaging, vital status from the Office for National Statistics and, from 2012, national chemotherapy data. The pilot has the support of the National Brain Tumour Registry itself, the UK National Cancer Information Network (NCIN), clinical groups and a number of charities representing the UK brain tumour patient community. The project’s steering group recognises that the initiative is not without controversy for it contains possible risks as well as
benefits for patients who chose to participate. Among the benefits are: upholding an individual’s rights to access their own healthcare data; empowering patients to take a more active role in their treatments and care thus improving patient experience; driving up data quality and context (patients will be able to see, question and comment on their own data); patients being better prepared to discuss their care with their clinicians; and the opportunity to contribute to the registry longer term information about their brain tumour journeys which has the potential to improve not only treatment but quality of survivorship as well. So it will not only be a case of asking what your brain tumour registry can do for you as the patient, but what you can also do for your brain tumour registry. Among the risks are: fear and anxiety potentially caused to patients by obtaining information which they may not easily understand or be able to appropriately interpret; the effects that patients being privy to this information may have on the clinician-patient relationship; and the potential for compromised security of personal data. The steering group recognises that in order to allay any fear and anxiety for the patient, most users of the portal will require information to be accompanied by professional interpretation so that medical terminology and data impact is correctly understood. At the heart of this pilot programme are two important notions. The first is recognising patient ownership of their own medical data. The second is the notion of personal choice, a tenet which is enshrined in the UK NHS (National Health Service) Constitution.3 It will be completely up to a brain tumour patient to choose whether he or she wishes to access their data on the
brain tumour registry. This innovative project is one of a number of emerging initiatives that focus on and support patients who wish to become experts in their own care. Another such initiative - not brain tumour specific but from which people with brain tumours can benefit - is the “European Patients Academy on Therapeutic Innovation” (EUPATI - see http://www.patientsacademy.eu). Launching in Spring 2012 by a consortium of 30 partners led by patient organisations, this is a multi-million Euro programme which aims to educate patient advocates and the lay public about personalised and predictive medicine, design and conduct of clinical trials, drug safety, risk/ benefit assessment, pharmaco-economics and drug development. EUPATI will provide educational material in six European languages targeting eleven European countries. 4 Patient portals for rich but hitherto un-mined sources of data such as brain tumour registries, together with the opportunity to benefit from educational programmes such as EUPATI, have the potential to transform the brain tumour journey’s landscape. n Notes: 1. Catt, Susan; Chalmers, Anthony; Fallowfield, Lesley. Psychosocial and supportive-care needs in high-grade glioma, Lancet Oncol 2008; 9:884-91 2. http://en.wikipedia.org/wiki/Health_information_ technology (accessed 6 November 2011) 3. http://webarchive.nationalarchives.gov.uk/+/www. dh.gov.uk/en/Healthcare/PatientChoice/DH_093410 (accessed 5 November 2011) 4. http://www.eu-patient.eu/Initatives-Policy/ Projects/EPF-led-EU-Projects/EUPATI/ (accessed 5 November 2011)
Rreprinted with the kind permission of the European Association of NeuroOncology Magazine: EUR ASSOC NEUROONCOL MAG 2012; 2 (1): 50–1. As well as a regular patient issues column, EANO’s official online journal contains peer-reviewed articles and reviews, case reports, congress reports, letters, society news and announcements from around the world with a special focus on Europe and the EANO Member States. To view the entire, free-access EANO journal,
30 years of hope and support for any Canadian affected by a brain tumour THANKS to the generosity of thousands of Canadians since 1982, the devastating impact of a brain tumour has been reduced by Brain Tumour Foundation of Canada. With a national network of volunteers, brain tumour patients, survivors and families, quality of life needs are addressed while also funding the research necessary to find the ever-elusive cure. Founded in London, Ontario, Brain Tumour Foundation of Canada began after Steve Northey lost his eight-yearold daughter to a brain tumour. Steve said: “My way of dealing with losing Kelly was to ensure that her death would not be in vain. In February 1982, I joined forces with Dr. Rolando Del Maestro, a neurosurgeon and brain tumour researcher who was starting up a laboratory. His wife, Pam Del Maestro, a neuroscience nurse, sat with us at their kitchen table, and the concept for the Brain Research Fund (the organization’s original name) was born. “This year is an important opportunity for the brain tumour community in Canada to pause and reflect on how far research and treatments have come since the three dedicated founders first began their effort to put a face and voice behind brain tumours,” says Executive Director Susan Marshall. “It’s also a chance to look to the future, towards the exciting things to come.”
Steve remembers: “We realized the benefit of connecting families in similar situations to share their experiences and learn from professionals in the field of neurosciences.” Today, it’s this purpose that continues to resonate and motivate thousands of volunteers, donors and supporters as we look to the future and a cure for this disease. Learn more about the anniversary year at www.BrainTumour. ca/30YearsofHope. n
Above: “I think it is important that people know what there is out there for brain tumour patients. There is support out there, we are not alone.” (Tom, brain tumour survivor, and his wife Nancy from Exeter, Ontario, Canada.)
visit http://www.kup.at/journals/eano/index.html ]
It has been my great privilege to work in the pediatric brain tumor community By Patricia Korpik, MSW, LCSW Director of the Family Support Program at the Pediatric Brain Tumor Foundation of the United States
grew up in a working class family in a small Midwestern town. My father died of cancer at a young age, leaving a wife and two small children, whose lives would be forever changed. So my early experience was one that has helped me recognize how life-changing a cancer diagnosis is for an entire family. I also can feel a family’s need for hope as they look to the medical and science professionals for a cure. My connection with the Pediatric Brain Tumor Foundation (PBTF) began about nine years ago, when I was working as a clinical social worker with the pediatric brain tumor patient population at Duke Medical Center in Durham, North Carolina (USA). I met Mike and Dianne Traynor (both of whom founded the PBTF in 1991) through the Foundation’s major support for research at Duke. It was a foundation I wanted to stay involved with and support. It has now been three years since I took the position of Director of the Family Support Program at PBTF. Foremost, I respond to calls and e-mails from parents, or concerned others who are looking for information, guidance, emotional support or referrals for resources. I develop resource materials for families and survivors and work to keep the information current and reliable. I am also involved in the process of awarding our scholarships. Social justice and child welfare I chose social work as a career early because of interest in developing the necessary social network to support people in need. My interests in social justice and child welfare grew from my own life experiences. My professional work began with severely disabled children and adults which connected me with the medical and educational systems. 110
We also offer a list of questions that a parent may consider when discussing their child’s tumor with the medical team. These brief but informative brochures are often used by physicians and given directly to parents at the time of diagnosis. They are also available for free by request on our website, www.pbtfus.org
Above: Patricia Korpik, who is the Director of the Family Support Program at the Pediatric Brain Tumor Foundation (USA)
I worked in pediatric brain injury rehabilitation which reinforced for me the importance of combining personal resilience and scientific discovery for the best outcomes. I was interested in the unique challenges that working with children with brain tumors, and their families would present, and felt I had something to offer. I also knew how much I would continue to learn from them. Support resources underpinned by reliable information Our goal is to have every parent be in a position to make the best possible decisions for their child. To do this, parents need to gain reliable information, possess healthy coping strategies for the emotional strain, and feel part of a support system. PBTF offers reliable and understandable information, professional contact for guidance and emotional support, referrals for resources of all kinds, advocacy, and hope for the future through our scholarship program.
Specific challenges There are pros and cons to the latest technology. On the positive side, I am able to communicate quickly with people throughout the United States, and internationally through e-mail and phone calls. We do get many inquiries for information and support from around the world and it is wonderful to know that the International Brain Tumour Alliance (IBTA) is there to use as a clearinghouse and referral source for anyone, anywhere, who is battling a brain tumor. Thanks to the IBTA for bringing the world a little closer in this fight because it will be through our combined efforts that we conquer this disease. I do miss the personal connection of face-to-face contact, especially when a family is in crisis. There have never been adequate resources to meet all the needs of some families, but the past several years have been the most challenging as financial resources are stretched beyond imagination. It is very difficult to watch as families struggle not only with their child’s medical needs, but also with housing, employment, transportation, and other basic needs. As far as the way in which I cope with the emotional and psychological challenges for me personally arising from my work, no doubt there is a need to attend to one’s self care and to maintain a perspective. Witnessing a child’s struggle and a family’s fears so closely does exact a toll even on
professionals. After 35 years in social work, I learned the importance of the support for my work of colleagues and family. However, all the children and families I have known have given me so much, I want to stay connected to the field of pediatric brain tumors and contribute where I can. I hope I am never out of this fight. Finding the healthy balance for each stage of our lives is important. In terms of my own relaxation, I find the most peace and renewal from natural beauty. From major wonders of the world, to a hummingbird, or flower, the vision is
calming and strengthening to me. I love to garden, and also enjoy the crafts of stained glass and quilting. I have been lucky enough to travel to many parts of the world and meet wonderful and inspiring people. My wish list for pediatric brain tumor patients First on my wish list for our patients is a cure, so children and families will have hope that they will have the opportunity to plan for the future and see all of these children grow up to be happy healthy adults.
In the meantime we must have more effective treatments with less damaging effects. Quality of life is of major importance. There must be support resources that match the needs of families. Perhaps this sounds selfish, but my life has been so enriched by my having known the many children, parents, grandparents, and others in my work, that I am driven to do more. It has been my privilege to have the experiences I have had - even when painful to witness - and to learn from children and their families. n
Meeting of the Cochrane Neuro-Oncology Interest Group at EANO 2012 THE Cochrane Collaboration (http:// www.cochrane.org/) is an international network of more than 28,000 people from over 100 countries, who work together to help health care providers, policy-makers, patients, their advocates and carers, make well-informed decisions about health care, based on the best available research evidence. This is done by preparing, updating and promoting the accessibility of Cochrane Reviews, which are then published online in The Cochrane Library in a form understandable to professionals and lay people. Like the International Brain Tumour Alliance (IBTA), The Cochrane Collaboration has no geographical boundaries. The Cochrane Collaboration is a UK charity (charity number 1045921) and does not accept commercial or conflicted funding. Neuro-oncologists and patients need to be able to source best evidence for treatment quickly and understand the limitations of the best evidence. The number of randomized controlled trials (RCTs) and Cochrane evidence based systematic reviews in neuro-oncology has been increasing over the last ten years.
Robin Grant (Consultant Neurologist, Edinburgh, UK, and past European Association of NeuroOncology/EANO President) and Michael Hart (Neurosurgeon in Training, Cambridge), with the support of the Cochrane Gynaecological Cancer/ Cochrane Editorial Team led by Gail Quinn, have formed a Cochrane NeuroOncology Group. Gail Quinn said: “The neuro-oncology titles are published through the Gynaecological Cancer Group’s editorial base because this Cochrane Group also looks after what is historically called the ‘orphan titles’ which are cancer titles for which there is no existing Cochrane Group.” She added: “This includes reviews of interventions that involve many different types of cancer (eg antibiotics for neutropenic fever, complementary therapies, post-treatment care, rare cancers and neuro-oncology). Now we have formalised the roles of Robin Grant and Mike Hart to Co-ordinating Editors and created a new Cochrane Neuro-Oncology Group because our neuro-oncology list is growing significantly.” One of the goals of the Group is to centralize the reviews, protocols or titles from 14 countries across the world on the Cochrane neuro-oncology webpage
(http://www.cochrane-gyncan.org/ neuro-oncology) and stimulate future systematic reviews in the area of neuro-oncology where they don’t exist. Each systematic review must address a clearly formulated question e.g.: “Can monoclonal antibodies improve survival in glioblastoma multiforme?” Kathy Oliver (Co-director of IBTA) will join the Editorial Board of the Cochrane Neuro-Oncology Group, as their patient/carer representative, to advise on the abstracts and plain language summaries, utilizing her journalistic skills. There are several steps to doing a review, but support is available at all stages. There will be a short meeting of the Cochrane Neuro-Oncology Interest Group at the EANO 2012 Meeting in Marseilles, France (http://www. eano2012.eu/) on Friday, September 7th from 11.00 to 13.00. If you are interested in attending please contact Gail Quinn (Managing Editor, Cochrane Gynaecological Cancer Group at gail. email@example.com) or Robin Grant (Coordinating Editor, Cochrane Neuro-Oncology Group at Robin.Grant@luht.scot.nhs.uk). n
Introducing ASATE By Oscar Prieto Martínez President, Asociación de Afectados por Tumores Cerebrales en España (ASATE), Spain
Above. Oscar Prieto Martínez of ASATE, Spain
he Asociación de Afectados por Tumores Cerebrales en España (ASATE - The Association of People Affected by Brain Tumors in Spain) was created on November 3, 2010. Since then my position has been as the ASATE President. In 2009 I was diagnosed with a brain tumor. Doctors decided to remove it with surgery and to apply radiotherapy and chemotherapy in order to eliminate it. While travelling on this brain tumor journey I started to search for patients’ organizations that could help and provide me with information about my disease. I couldn´t find any specifically dealing with brain tumors. Once I overcame my disease, after a long and painful treatment, I believed that future patients should have much more information than I had. So other patients and I decided to create a discussion group with medical specialists; this is how the ASATE was born. 112
Before the diagnosis of my brain tumor I had developed expertise in different law firms, specializing in telecommunications, new technologies and the Internet but I had no previous experience in the health sector. When I compared my previous professional career with my new one at ASATE, the biggest difference is the personal satisfaction when working with brain tumor associations and patients. A situation as sensitive as the diagnosis of a brain tumor requires a specific means to inform and support all patients with this terrible disease and their families. Our Association is very young, but we have developed different activities which have been well received by the medical community and brain tumor patients in Spain. In fact, in 2011 we collected the award for the most influential patients’ association in Spain. This award was given by the communications industry which operates in the health sector. Why I became involved It was important for me to become involved in the ASATE project because I too had overcome a brain tumor and knew firsthand the doubts, fears and lack of information that patients and families have to deal with. Having the opportunity to use my time to help people has become a responsibility for me and I have no words to explain how satisfying this is. By being involved with ASATE, we are rewarded with the smile and gratitude of patients who have overcome a brain tumor. We are also rewarded with the happiness of the family and friends who knew nothing about this illness but now do know. We see the satisfaction when we help to provide ways to assist patients, for example by giving them information about the disease. Coping with the pressures of this work There are, of course, difficult moments in this work. I try to see things from a positive standpoint and not to think about the negative aspects of the disease. I try to transmit a message of optimism to patients. It’s difficult but the situation for patients themselves is much more complicated. We always try to communicate a positive message: “You can do this. You can!”
A very important aspect from my point of view is to try to have free time to detach yourself from problems and try to relax with the family or friends. A good way is playing sports or having walks and chats. My advice would be: learn how to enjoy day-to-day things. Brain tumor challenges I think one of the challenges brain tumor patients face is the lack of hope which stops them from being more positive. This challenge requires that current information is made available. Rehabilitation is of great importance for the future of patients; this matter needs to be improved with regard to both the service and accommodation provided and our government should be pushed regarding this. Public health in Spain is admirable and has a good reputation internationally. But many things can be improved. ASATE has published an atlas of public hospitals in Spain which have brain tumor medical specialists. The aim is to organize them into discussion groups in order to find the best way to treat this disease and its rehabilitation. This proposal is starting to achieve its goals. In my opinion, there are three mandatory things that all brain tumor patients should receive: 1. All patients should be able to get clear, accurate and understandable information about their disease. 2. All patients should have access to a person who is informed of all the steps involved during treatment. As an example, this could include information on MRI, the side effects of radiotherapy and chemotherapy and the importance of certain medications. 3. All patients should have access to a psycho-oncologist, a rehabilitation specialist and a physiotherapist. n
For more information about ASATE’s activities, please visit our website: http://www.asate.es We are also delighted to receive feedback from our website users who can contact us at this email address: firstname.lastname@example.org
We help patients and family! Join us! We want to improve the quality of life of patients! www.asate.es
We strive to Support patient with primary brain tumors and their spouses and friends Raise funding to research, striving to eliminate brain tumors Raise public awareness regarding brain tumor problems and awareness
Join us! www.hjarntumorforeningen.se
Subscribe to the IBTA’s free electronic news Visit www.theibta.org and sign up Keep in contact with what’s happening in the international brain tumour community Here are some examples of news items which also contained hyperlinks to the relevant source material.
Meningiomas: The results have been published of a major study, led by Dr Elizabeth B. Cla us of Yale, which examined the rela tionship between family and person al medical history and menin gioma risk. 1124 patients with me ningioma were involved. Compared with the control group patients we re more likely to report a first-degr ee family history of meningioma (mo re so in younger cases). They we re less likely to report immune con ditions, including allergy, and mo re likely to report a history of thyroid cancer. n
(February 2012 IBTA E New
therlands: Developments in The Ne received has B BB Dutch company totch Du a a grant of €600,000 from t por a government agency to sup rship with brain drug delivery partne pharma a (as yet unnamed) top-5 ogy nol company using its G-Tech
ssed and UK child embarra e has been penalised: Ther cident in the UK outrage at an in ar old girl with a where a five-ye forced to clean brain tumour was at e from the floor up her own urin stand facing the school and then n utes. Her conditio wall for ten min f. el rs he r wetting often results in he in h to be done There is still muc ation, advocacy, the areas of educ ain raising about br and awarenessey e effects th tumours and th can cause. n (February 2012
IBTA E News)
have used MRS and IDH1: Scientists scopy magnetic resonance spectro mutation (MRS) to identify the IDH1 and s ple in both tumour sam tumours patients with glioma brain ule by searching for the molec has been It G). (2H te tara 2-hydroxyglu “dispense suggested that this may surgery”. ve with the need for invasi technique Hopefully, the results of this eted will be used to develop targ king a trac t jus n tha therapies, rather patient’s progress. y is At the present time surger the type used not only to identify ry of which enhances the delive In June in. bra specific drugs to the ced 2011 the Company announ ical trial approval for a Phase I/II clin for brain testing its product 2B3-101 cer. n metastases from breast can s)
(January 2012 IBTA E New
as a and grade of tumour but use of the debulking process prior to ients are concomitant therapy. Pat a Doctor uld sho d likely to be puzzle , rate ope say: “We don’t need to e hav from the MRS we know you tation”. a glioma with the IDH1 mu Patterns In a recently released US 6 200 of Care (POC) study for ients with approximately 65% of pat or total a GBM received a partial a relevance resection. There might be case of the in for the MRS technique inoperable tumours. n s) (January 2012 IBTA E New
Visual field test ing: An Edinburg h (UK) based com pany i2eye Diagnostics has developed a device called SV OP (saccadic vector optokinet ic perimetry) to measure a pers on’s central and peripheral vision by instinctive responses to lig ht and movemen t and if any issue s are identified they can be explored for the possibilit y of stroke or a br ain tumour. n
(March 2012 IBT A
Danish bra in tumour statistics: The 2010 re port of the number fro Danish m 638 to 74 Cancer Reg 8 (between istry notes 2 009 and 20 a n 10?). There in cr eased incidence o is no simila f CNS tumo increase am r urs in men ong wome In the rathe . n . The reason r uncertain fo r th e in cr la e ase in men nguage of a Google is uncertain Over the pa translation . it is stated: st 10-year p “There was e riod (we a significan have) seen t increase a steady in of tumors in crease, wh to some ext the brain a ich n e d nt (is) a refle central nervous sy ct io stem in me in n cr o eased diag f n. The nosis as a increase is result of 16 percent. a general fo in incidence cus on the rate, the re detection sponses to of cancer w (which ith highly in correspond cr eased s to?) an in imaging act crease in th ivity.” n e (January 20 12 IBTA E News)
Something to aim for: Discussing a 21,626-person study of the fiveyear survival rate for children and adolescents with acute lymphoblastic leukemia (ALL), Dr Stephen Hunger of the University of Colorado Cancer Centre said that “In early 1960s this disease was incurable... Then in the late 1960s, the cure rate was 10 percent. Now almost
90 percent of children and adolescents diagnosed with ALL will be cured. Still, a 90-percent survival rate is little consolation to the 10 percent of families whose child doesn’t survive. There’s still more work to be done”. If only this progress and these statistics could be applied to paediatric brain tumours. n
(March 2012 IBTA E News)
American stases: The Brain meta ncology Radiation O Society for ideline 16-page Gu a d e su is s ha and therapeutic on the radio for newly nagement surgical ma stasis(es). brain meta diagnosed istinguish endations d m m co re s It ultiple ngle and m between si with s and those se a st ta e m brain sis. n oor progno a good or p ews)
12 IBTA E N (February 20
Cancer patients with a poor prognosis need strong defenders THERE is an ongoing debate taking place in the developed countries about the cost of expensive new therapies. It is important that cancer patients with a poor prognosis and few or no other options do not get shot down in the crossfire. The IBTA acknowledges several important facts. We realise that some therapies will cost a large amount of money to bring to market and that manufacturers should receive a fair and reasonable return on what they have invested (over a long period of time and with a large degree of financial risk) in promising new therapies We also acknowledge that health systems are cash-strapped and need to spend their money carefully. Unfortunately, there are not currently dozens of promising therapies on the horizon for malignant primary brain tumours. As will be seen from the highly informative Brain Tumour Timeline reproduced elsewhere in this magazine, there has been steady, but not rapid enough, improvement in therapies that are available. In September 2011 the highly respected journal Lancet Oncology released a lengthy paper entitled “Delivering affordable cancer care in high income countries”. This paper generated over 4,000 media reports,
many of which followed the approach in the UK’s Daily Mail on-line headline: “Don’t give out cancer drugs if it’s just to extend life: treatment costs can’t be justified, say experts”. The IBTA sought to identify the basis for this statement. There was no such direct statement in the 47 pages of the Lancet paper but the synopsis of the Lancet article did carry the words: “The cancer profession and industry should take responsibility and not accept a substandard evidence base and an ethos of very small benefit at whatever cost...” That statement was apparently the basis for the Daily Mail’s provocative headline. Authors of such papers need to be alert to the consequences of their statements in the lay, public media and the effect they may have on very vulnerable patients and their families. Unfortunately, the damage was done and all those cancer patients who had fought and campaigned hard to access promising new therapies with the goal of extended survival or a better quality of life (even though their survival might be limited) were made to feel guilty, as though they might be personally responsible for their nation’s spiralling health expenditure. The Lancet paper’s authors must have known that a loosely worded synopsis such as that quoted above was certain to generate a biased headline. As far as the IBTA can determine the
principal author did not issue an official statement criticising exaggerated newspaper headlines which were supposedly based on the Lancet paper but may have tried to correct the record in subsequent personal interviews. In a similar fashion, and in the same month, the Australian government’s respected “National Health and Medical Research Council” issued a guide for patients, family and carers with an advanced chronic or terminal condition so that people affected by a serious or life-threatening illness could consider the ethical aspects of their situation. In the section on “Justice” the guide suggests that patients should ask themselves this question (which is listed as the first): “1. Do I think that the demands of my care are becoming a burden to others and how do I feel about this?” Can any of our magazine readers visualise themselves asking a patient with a chronic or terminal condition such a question? The question and its context are absurd. These episodes demonstrate the continuing need for strong advocacy on behalf of vulnerable cancer patients and a need to remind academics, clinicians and others to have a greater concern for the effect of their words. n
‘Benign’ versus ‘non-malignant’ Non-Malignant Brain Tumour Handbook. 1st Edition. Brain Tumour Foundation of Canada. 2011. 45 pps. www.braintumour.ca Enquiries to Janic Gorayeb at email@example.com
Above: The cover of the Non-Malignant Brain Tumour Handbook
THE word “benign” has bedevilled discussion in the brain tumour community in many countries. Because the word emerges from within the historical classification of cancers its use in the
brain tumour context can be misleading. The diagnosis of a benign tumour in other cancers can be relatively straightforward. If say, for example, it is a benign tumour on one’s leg then there is every possibility that its removal through surgery will represent the end of the story, unless it recurs. Not so with any brain tumour within the skull. Even if it has been described as “benign” its location and its growth or recurrence after surgery can have a devastating effect. The editors of this handbook are well aware of the problem of language: “This resource aims to diminish the misconception that non-malignant or ‘benign’ tumours do not alter the lives of those affected. In fact, non-malignant or ‘benign’ tumours do have a significant impact on your health and well-being.” The resource has been compiled by five well-qualified editors and draws on material gathered during the Canadian “Experience of Non-Malignant Brain Tumour Survivors” exercise in 2010, various brainstorming sessions, individuals, and focus groups.
It consists of nine short chapters of generic information about brain tumours and a useful Appendix describing the various types of non-malignant brain tumour, their signs and symptoms and treatment. These types are: acoustic neuroma, choroid plexus papilloma, craniopharyngioma, ependymoma, hemangioblastoma, meningioma, pilocytic astrocytoma, and pituitary adenoma. A person diagnosed with one of these eight tumours listed above will undoubtedly want more information but this Handbook is only intended as an introductory text. One hopes that the existence of the Handbook will go a long way in changing the language of common usage from “benign” to “non-malignant”. Changing words will change concepts and could lead to greater attention by clinicians and staff in cancer centres which deal with all cancers and where “benign” has a certain historical meaning. Another useful move would be insistence that the so-called “benign” brain tumours are included in the statistics counted for all brain tumours in cancer registries. n DS
Rain on the walk didn’t dampen enthusiasm Stan Shrodo (Central New Jersey Brain Tumor Support Group) and Bruce Blount (Ocean and Monmouth County Brain Tumor Support Group) let us know that a walk was held in New Egypt, New Jersey (USA) on 15th May 2011. Stan commented: “It was a rainy, grey morning but the light rain didn’t start again until we were about halfway
through the walk. Almost everyone was in good spirits and I heard several comments like: “I had a great time walking in the rain.” and “I can’t wait to do this again next year when it’s sunny.” Bruce Blount said: “We had a “Walk to END Brain Tumors” In New Egypt last week. There were 23 walkers, and the course was three miles. That totals 69 miles which we have donated to the
IBTA’s “Walk Around the World for Brain Tumours”. n
Photo by Patrick Riordan
Historic Holkham Hall once again home to the Astro Fund’s 5th Norfolk Family Walk Christine Forecast wrote that walkers in the annual Holkham Hall Family Walk for the Astro Fund in October 2011 resulted in a contribution of 899 miles to the “Walk Around the World for Brain Tumours” target and that GBP £7,000 was raised for brain tumour research and support purposes. Holkham Hall in Wells-next-the-Sea, Norfolk is a magnificent 18th century country house.
In a media statement the group noted: “The fifth Annual Norfolk Family Walk for brain tumour research and support took place on Saturday 8th October in the beautiful grounds of Holkham Hall once more. Children walking the one mile route played games as they made their way up the hill to the obelisk. Some people came long distances to join in - from Surrey, Cheshire and several from Lincolnshire. The “Norwich Girls” all walked ten miles in memory
Beyond cancer care
of their great friend Gemma Barrett. Gemma passed away in November 2010, at the age of 29, having been diagnosed with a brain tumour four years previously. The eight girls (all Gemma’s school friends from Norwich High School) raised GBP £2,850 in sponsorship. A team from Hartismere High School, located in Eye, Suffolk, where Gemma taught, also walked ten miles in honour of her memory.” n
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The importance of mentoring programmes for young brain tumor doctors and young trial investigators An interview with Dr Enrico Franceschi Medical Oncologist, Medical Oncology Department, Bellaria-Maggiore Hospital, Bologna, Italy
IBTA: Please first tell us a little about yourself and why you became interested in neurooncology. For example, did you come from a family with a medical or research background? EF: I am 35 years old and my principal field of interest is neuro-oncology. I did not come from a family with a medical or research background, but I have always been convinced that this was what I wanted to do. It is difficult for me to find the deep reason that moved me to love this field but ever since I was a student of medicine I spent time during the summer holidays in the anatomy and physiology labs. I was intrigued to understand how our brains developed and how interesting the correlations were between its different areas. Hence, when I chose to enter medical oncology, the decision to study brain tumors was quite logical for me.
IBTA: Please tell us a little about your current work in the field of neuro oncology and what you are particularly interested in regarding brain tumors. EF: Despite brain tumors being rare diseases, the expertise and scientific profile of our Director, Dr Alba A Brandes, attracts a large number of these patients to our department, and therefore I also have the opportunity to visit and treat many brain tumor patients as well as participating in our own institution’s clinical trials and EORTC [European Organisation for Research and Treatment of Cancer] studies. This is, of course, a consequence of having a well recognized opinion leader as a chief and mentor. Moreover, I do believe that being a medical oncologist and keeping an overview of most 118
this is the real issue in being a strong mentor - to help young investigators to find their way, define their attitudes and to help young investigators be what they could and should be. I think that a strong mentor is also able to understand when to spur on or slow down younger people.
Above: Young investigator Dr Enrico Franceschi (left) with his mentor, Dr Alba A Brandes (right)
cancer types adds value, even in the care of patients with brain tumors. I like taking care of patients, as well as being involved in neuro oncology clinical research. I believe that clinical work looking after patients is indivisible from clinical research, and that the interaction of these two aspects contribute to improve each other. IBTA: Why is it important for young clinical trial investigators to have a strong mentor? EF: Having a mentor who cares for your growth, in a complex and delicate field such as oncology, is essential. In my mind, a strong mentor is able to share knowledge and can foster the personal and professional growth of a young investigator. A strong mentor is able to develop specific skills that enhance the young investigator’s professional and personal growth. Therefore, it means that someone who “knows the way” helps you to do your own way. I do believe that
IBTA: What are the benefits for young doctors in having a mentor? EF: There are a number of benefits in having a strong mentor. The ability of a mentor to share experience is an inestimable treasure for a young doctor. A mentor can also give career opportunities to young doctors, such as participating in cooperative groups and making national and international contacts. Another benefit in having a mentor is for the young doctor to have the chance of being proactive in several projects. IBTA: What are the benefits for the mentor? EF: Well, mentorship is different from simple coaching. Mentorship is first of all a relationship between people. Therefore, I think (and hope) that this means for the mentor to have a young interlocutor, as well as hearing another point of view. The mentor can also evaluate the ideas of an early career investigator involved in the same field. IBTA: As a young investigator, what do you see are the main challenges for someone who is relatively new to the field? EF: I think that the main challenge for a young investigator who is new to the field is to believe in and carry out his or
‘ her own ideas and research, despite the difficulties that a young investigator may encounter. IBTA: Can you tell us a little bit about the new EORTC mentorship initiative? EF: I was lucky enough to experience the importance of having a strong mentor. Thanks to my own mentor, Dr Brandes, I have had the opportunity to contribute to the writing of a phase I/II protocol of the EORTC Brain Tumor Group; to be involved in protocol development and conduct; to take part in teleconference discussions during the trial and to contribute to data evaluation and writing the trial paper. But realistically, only a minority of young investigators have such similar luck. Therefore, with the great help of Professor Francois Meunier (Director General of the EORTC), Dr Roger Stupp (EORTC President-Elect), Denis Lacombe (Director, EORTC), Professor Monika Hegi (EORTC Pharmacology and Molecular Mechanisms Group, and Brain Tumor Group) and Jan Bogaerts (Head of Statistics, EORTC) we started a new EORTC
initiative. It is called the “EORTC Early Career Investigators (ECI) Platform”. Thanks to this new EORTC project, young, early career investigators with good ideas have the chance to send drafts of projects to EORTC groups (such as the EORTC Brain Tumor Group), and if they are considered of value, initiating a protocol development and a mentorship program inside the EORTC. We hope that this initiative may help many young investigators. IBTA: On a personal level, how do you cope with the emotional and psychological challenges arising from your work with brain tumor patients? EF: This is extremely difficult, especially with younger people - sometimes of my same age - or people I have known before their disease. When the patient is the same age as me it makes the relationship easier, but this same relationship affects you very deeply because of the age similarity. IBTA: What inspires you in your work with brain tumor patients?
EF: The hope, the dream that all the efforts we make will lead to a cure for brain tumors with lower toxicities. The research is moving so fast that we should be able to find novel treatments in the next few years. We will understand the hidden causes of brain tumors, “and by opposing end them” to quote an apt phrase from Shakespeare’s Hamlet. IBTA: How do you relax? EF: Relax? Well really there is so little time to relax! There are too many things to do. But my principal way to relax is spending as much time as I can with my daughter Maria Sofia. She is five years old and she is fantastic. She represents energy and tenderness at the same time. She’s the doctor of my soul. But I also need to exercise. I like to jog or play soccer with friends. Finally I love travelling, and especially visiting ruins of prehistoric and ancient civilizations. The citizens who inhabited these worlds seem so far away in time and knowledge, but yet they are very close to modern human beings in many ways. n
Paediatric neuroblastoma and medulloblastoma patients set to benefit from cutting-edge cloud computing technology THE Neuroblastoma and Medulloblastoma Translational Research Consortium (NMTRC), supported by the Translational Genomics Research Institute (TGen) in Phoenix, Arizona (USA), has launched personalized medicine clinical trials focused first on neuroblastoma (cancer of the nervous tissue), and eventually expanding to other children’s cancers, including medulloblastoma (a type of brain tumor). In partnership with Dell Computers, who committed funding, employee engagement and cloud computing technology to support the initiative at TGen, the NMTRC is coordinating clinical tests that include whole-genome sequencing (i.e. the spelling out), of each patient’s entire 3-billion-letter DNA.
Whole-genome sequencing matches a patient’s normal DNA and cancer DNA to discover where there are mutations, potential targets that could be matched to existing FDA-approved drugs, or point researchers toward the development of effective new drugs. Both the cost and the time to conduct whole-genome sequencing continue to drop. But there is another hurdle for researchers and physicians: How to quickly access the ultra-high volumes of data involved in these comprehensive genomic tests, while at the same time ensuring that the information is secure and the patient’s privacy is protected. Because of Dell’s cloud solution, the data can reside at TGen in Arizona and yet be quickly accessed globally by anyone in the NMTRC system. Dell’s cloud has the
capacity to handle the high volumes of data, and at the same time support timely processing of patient tumors, helping predict the best drug therapy for each patient. Dell’s cloud solution provides the computing power needed to help increase TGen’s gene sequencing and analysis capacity by 1,200 percent. The cloud is expected to accelerate genetic analysis and identification of targeted treatments for each patient, reducing the information processing time from months to just a few days. The new TGen cloud will also facilitate rapid transfer of information to international partners and lay the groundwork for expansion of the trial to additional types of childhood cancers in the future. n
An example of cancer advocacy ADVOCACY is a key component of work within the cancer area but it is often neglected. Organisations are well placed to undertake advocacy but so are individuals. Advocacy can arise when a gap in service provision, or an unmet need, has been identified. In this interview Brain Tumour magazine spoke with Ruth Peberdy from the United Kingdom about her campaigning for the introduction of CyberKnife into the UK. Why focus on CyberKnife? CyberKnife is one more tool in the armoury of the fight against brain tumours. CyberKnife isn’t a “knife” at all but a machine which uses very thin beams of radiation which are directed at certain types of brain tumours and other tumours in the body via a robotic arm. Ruth’s story revolves around her husband’s battle with pancreatic cancer which is very similar in terms of prognosis and lethality to a malignant primary brain tumour. Her story might provide inspiration to someone from the brain tumour world but it also illustrates the opportunity to join forces with people who are campaigning from within their own cancer experience. Ruth was a nurse within the UK National Health Service (NHS) for 30 years, with over 20 years spent as a community nurse. Brain Tumour magazine interviewed Ruth about her CyberKnife campaign.
Above: Ruth Peberdy (front row, first on right) holds a larger-than-life-size donation cheque as part of her campaigning.
IBTA: When did you commence your campaigning? RP: I began my quest very soon after Ron died, which makes it February 2005. IBTA: What activities did you use to help your campaign? RP: My first thoughts were that I had to
IBTA: What was the first major breakthrough in getting CyberKnife to the UK? What other successes followed? RP: For me, the first breakthrough was the Harley Street Clinic setting up the first CyberKnife system here in the UK in 2009. I knew then that we were on course. The Harley Street Clinic is owned
In certain circumstances, as these citations reveal, CyberKnife can have a relevance in a variety of brain tumour situations: n
IBTA: What led you to campaign for CyberKnife in the UK? RP: When I first learned of the existence of CyberKnife in 2004, I realised that here was something which would make a great impact on how tumours could be treated in the future. At that time my husband Ron had been diagnosed with pancreatic cancer in January of that year. Friends in South Florida told us about CyberKnife, which was how we came to travel there so he could have this treatment. Before he died, I told Ron that I would make it my business to bring CyberKnife to the southwest [of the UK], which is where we lived and I still do.
create as much awareness as I could so that as many people as possible would know of CyberKnife’s existence. At that time I didn’t even know how to switch the computer on, so I learned basic skills in order to be able to reach out to people over the Internet. I campaigned day and night, even doing car boot sales (with all manner of “stuff” that friends and family gave me) and used the car boot sales, among other ways, as a platform to spread the word about CyberKnife. The car boot sales have been great because from people knowing very little back in 2005, I now have people coming to me and telling me that they have seen CyberKnife on television, in newspapers and on the Internet.
Survival following stereotactic radiosurgery for newly diagnosed and recurrent glioblastoma multiforme: a multicenter experience, Alan T. Villavicencio, Sigita Burneikien, Pantaleo Romanelli, Laura Fariselli, Lee McNeely, John D. Lipani, Steven D. Chang, E. Lee Nelson, Melinda McIntyre, Giovanni Broggi, John R. Adler Jr., Neurosurg Rev, DOI 10.1007/s10143-009-0212-6
Re-irradiation with Radiosurgery for Recurrent Glioblastoma Multiforme, J. A. Torok, M.D., R. E. Wegner, M.D., A. H. Mintz, M.D., D. E. Heron, M.D., S. A. Burton, M.D., Technology in Cancer Research and Treatment ISSN 1533-0346Volume 10, Number 3, June 2011 n
Increased migration of a human glioma cell line after in vitro CyberKnife irradiation, Alessandra Canazza, Chiara Calatozzolo,Luisa Fumagalli, Achille Bergantin, Francesco Ghielmetti, Laura Fariselli, Danilo Croci, Andrea Salmaggi and Emilio Ciusani, Cancer Biology & Therapy 12:7, 1-5; October 1, 2011 n
‘ by HCA (a private hospital group) and I was so delighted to visit the Clinic and see CyberKnife installed there for myself. I was very excited to stand beside it for photographs. The London Clinic came next, also privately owned. However, when I learned that due to a generous donation, Mount Vernon Hospital in Middlesex - a National Health Service (NHS) Hospital - was to have the first NHS CyberKnife, I was ecstatic. I then realised that what I had been thinking over the years since I started my quest was beginning to happen. At first I was a lone voice in the wilderness. Not so now, because we have several CyberKnife charities which campaign for its wider use. The other big success is the setting-up of the new national UKCK Network Charity and we hope to encourage the teaching hospitals to set up their own centres and provide a useful tool with regard to information
Brain Tumour Foundation of India’s event for the International Brain Tumour Awareness Week THE Brain Tumour Foundation of India (BTF - www.braintumourindia.com), is a dedicated charity committed to the welfare of people with brain tumours and their families in India. The BTF aims to provide quality treatment, rehabilitation and research. Dr Rakesh Jalali reported that the BTF celebrated its Annual Art Festival at the Tata Memorial Hospital, Mumbai on 30th October, 2011 as a part of the IBTA’s “International Brain Tumour Awareness Week”. Dr Jalali said: “The function was attended by more than 200 patients and their families from all over the country. Patients, their families, volunteers and staff of BTF poured their emotions out on paper in the form of
regarding access to CyberKnife and about what it is able to treat. IBTA: Were you eventually able to attract other people to your campaign who thought the same way as you? RP: Yes, that has been a gradual process and I think that has manifested itself in what has happened with regard to the setting up of the St Bartholomew’s Hospital (known as “Barts”) CyberKnife in London last year (2011). My husband Ron was a Metropolitan Freemason and was a larger-than-life character who had many friends not only in Freemasonry but in the City of London as well. Associates in Ron’s Lodge, and many others, knew that I had set up his charity. As time progressed and there was more awareness of the benefits of using CyberKnife for certain tumours, the Metropolitan Masonic Charity also raised
drawings and art work. This was followed by a very inspiring and heart warming cultural programme and fancy dress display by the children... The performances were well appreciated. The chief guests of the function, Dr R Badwe, Director, Tata Memorial Centre, and noted singer Jaspinder Narula graciously attended the function and were generous in their support and appreciation. All children and families were given gifts as a token of bravery in their fight against this disease. A message from the International Brain Tumour Alliance (IBTA) to BTF India was displayed prominently on posters and read out to the participants. The function was well covered by print media. Finally, on behalf of all of us at the BTF, we would like to extend our gratitude to the IBTA for taking up this important cause. BTF
funds for a CyberKnife at Bart’s. So I guess I am proud that Ron is working from whichever cloud he is on! I am sure he is wearing his big grin right now. IBTA: What obstacles did you have to overcome in your campaign? RP: Believe it or not, the biggest obstacles were health professionals who gave me grief and were extremely patronising. I have been described as a hysterical widow and a busybody along with a lot of other names. I have never cared what people thought of my quest because I knew from the start that what I was doing was right. It has been a struggle to get this far. I never dreamed that this issue would become such a political one and that I would have the opportunity to say my piece at the House of Commons. It has been an incredible journey, one which I feel proud to have made. However, it is not yet finished. n
also pledges solidarity and support to everyone throughout the world towards spreading the awareness message and we wish everyone great success.” n
International collaboration to accelerate research for diffuse intrinsic pontine gliomas By Maryam Fouladi, MD, MSc, FRCP, Professor of Pediatrics, University of Cincinnati College of Medicine and Medical Director, Neuro-Oncology Program, Cancer and Blood Diseases Institute, Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, United States
espite significant improvements in outcomes for many pediatric cancers over the last several decades, the prognosis for patients with diffuse intrinsic pontine gliomas (DIPG) remains very poor. While DIPGs represent only 10-15 percent of childhood brain tumors, they are the most common cause of death due to brain tumor in children. DIPGs are located on the brainstem, and the tumor invades surrounding tissue without well-defined edges, making surgical removal impossible. Radiation therapy can temporarily shrink tumors and ease symptoms, but clinical trials have so far showed no benefit from chemotherapy or other treatments, and median survival from diagnosis remains less than a year. New therapeutic approaches to DIPGs are urgently needed, but the rarity of these tumors makes studying them difficult. In March 2011, an international group of DIPG researchers, families affected by DIPG, and representatives from foundations funding pediatric cancer research gathered at Cincinnati Children’s Hospital Medical Center, in Cincinnati, Ohio (USA) for a symposium sponsored by Cincinnati Children’s, Children’s Memorial Hospital of Chicago and The Cure Starts Now Foundation. The purpose of the symposium was to share the 122
latest research on DIPG, but also to generate a roadmap for collaborative efforts to accelerate the search for effective therapies. Attendees agreed that because few medical centers see more than a handful of DIPG cases each year, there was a critical need for a comprehensive international database of clinical, radiological, pathological, and demographic data about children with DIPG, linked to a sophisticated bioinformatics repository of molecular-genetic data obtained from analysis of tumor samples. Such a database would help researchers to better understand the epidemiology and biology of the disease, speeding up the search for new therapeutic targets and strategies. Both researchers and family advocates left the symposium committed to creating an ambitious International DIPG Registry to collect a continuum of data from basic biology to clinical practice that would help laboratory and clinical investigators to (1) better understand the biology of DIPG; (2) identify and study potential new therapies; and (3) develop new approaches to diagnosis, response assessment, and multidisciplinary treatment and follow-up in order to improve outcomes for all patients. Thanks to the efforts of collaborators from a dozen academic medical centers
in at least seven countries and the generous support of the DIPG Collaborative (a coalition of pediatric brain tumor research foundations) the International DIPG Registry launched in April 2012. When a physician or family member refers a child with DIPG to the Registry, a careful process of informed consent is carried out, and Registry staff work with the treating hospital to obtain comprehensive records of the child’s diagnosis, treatment, and clinical course, including neuroimaging scans and tumor samples from biopsy or autopsy when available. These materials are carefully reviewed by Registry experts, including neuroradiologists and pathologists, to ensure that Registry data is accurate and consistent. This data is entered into the Registry without details that could identify specific patients, but it is linked anonymously to a bioinformatics repository containing molecular-genetic data from DIPG tumor samples, both from previous research and from new analysis by Registry scientists. The Registry will be the largest and most comprehensive collection of data from a diverse cohort of DIPG patients available to researchers. Two initial research projects using Registry data will lay an important foundation for future work. Registry collaborators Darren Hargrave, MD, of Great Ormond Street Hospital for Children, London, UK, and Jacques Grill, MD, PhD, of the Gustave Roussy Institute of Villejuif, France, will undertake an important study of long-term survivors of DIPG. While most patients diagnosed with DIPG survive less than a year, a small number of long-term survivors are reported in medical literature. This project will describe the clinical,
radiographic, pathological, and biological characteristics of long-term survivors and attempt to correlate key variables with these unusual outcomes, in the hopes of illuminating aspects of tumor or patient biology that may yield therapeutic targets. A second project, led by Ute Bartels, MD, and Eric Bouffet, MD, neurooncologists at The Hospital for Sick Children in Toronto, Canada, will examine the epidemiology of DIPG in North America from 2000 - 2010. While the scientific literature contains reports on the incidence of DIPG from individual medical centers, no comprehensive epidemiological survey of a large population has ever been carried out. This study should provide data important for planning future clinical trials of new therapies and may help identify clinical features that correlate with disease course and prognosis.
Ultimately, Registry investigators hope to promote robust collaborative research projects on all aspects of DIPG, and will make Registry data available to external investigators after review of the proposed research. Cincinnati Children’s is the coordinating center for North American operations of the Registry, with The Hospital for Sick Children in Toronto, Ontario, hosting a second tissue repository for tumor samples from Canadian participants. Registry sites in Europe will open over the next year. The International DIPG Registry exists because of the extraordinary commitment of the DIPG Collaborative, including The Cure Starts Now Foundation, The Jeffrey Thomas Hayden Foundation, the Reflections of Grace Foundation, Benny’s World, Soar with Grace, Smiles for Sophie Forever and others, as well
as in-kind support from Forte Research Systems. Keith Desserich, who co-founded The Cure Starts Now Foundation with his wife Brooke in memory of their daughter Elena, was instrumental in building the DIPG Collaborative. In 2009, the Desserichs published Notes Left Behind, a New York Times-bestselling account of Elena’s battle against DIPG, including many of the hundreds of notes and works of art that six-year-old Elena left hidden for her parents and sister. n
To learn more about the International DIPG registry, please visit: www.dipgregistry.org or contact the Registry office at 513-636-2799 (USA) or firstname.lastname@example.org
Indian Society of Neuro-Oncology Annual Conference RAKESH Jalali from India wrote to the IBTA to let us know that the 4th Annual Conference of the Indian Society of Neuro-Oncology (ISNO) was a great success. Dr Jalali, who is the Founder General Secretary of ISNO (and also in charge of the Brain Tumour Foundation of India) sent us a short report. He wrote: The 4th ISNO conference attracted more than 230 delegates from all around the country. The scientific content was of high quality, as confirmed by the feedback from the attendees. The two and a half day meeting took place at the National Institute of Mental Health and Neurosciences (NIMHANS) in Bangalore. The focus of the meeting was the growing interest in the molecular biology of brain tumours and how it has influenced our clinical practice and the likely road map in the future. The discussions also focussed on day-to-day clinical problems including in paediatric brain tumours,
Above: Dr. Chitra Sarkar, President of ISNO (centre), lighting the lamp at the inaugural function
meningiomas and an interesting session on rare hereditary brain tumours. Dr Chitra Sarkar, who, as President of ISNO has led the Society admirably, gave a very inspirational talk during her Presidential Oration. Dr CE Deopujari (ISNO President Elect) was also recognised. The overseas faculty included Alfred Yung, Michael Brada (who gave an outstanding talk for the 4th Ab Guha ISNO Oration Award), Webster Cavenee, Ken Aldape, Vinay Puduvalli, Ashwatha Narayana, Santosh Kesari, Stefaan Van Gool and others.
A large number of young Indian scientists presented their work. Four of them received ISNO best paper awards in the form of 10,000 Rupees each. Charles Haynes, Chief Executive of the Society for Neuro Oncology (SNO) gave an overview of possible greater international collaboration and was very supportive of ISNO’s efforts. Dr Vani Santosh from NIMHANS, and the organising secretary for this conference, deserves a lot of credit for the excellent success of the meeting. n
Above: Left to right: Dr. Vani Santosh, Dr. Chitra Sarkar, Dr. P. Satish Chandra (chief guest), Dr. MRS Rao (guest of honor), Dr. Rakesh Jalali, Dr. Arivazhagan
Mission4Maureen By Rosie Gellott, Director of Development, Mission4Maureen, Ohio, United States
MISSION4MAUREEN is a national brain tumor charity in the United States, in memory of Maureen Lowis. Maureen was born and raised in the state of Ohio and in college she studied to become a special education teacher. She worked at that job until she married and began a family. Then one Thanksgiving holiday everything changed. That was the day that this loving wife and mother of three, was taken to the emergency room and told that she had a brain tumor. Like many cancer patients, Maureen had surgery, radiation and chemotherapy. But unlike many cancer patients her prognosis was bleak. Maureen fought harder than you can possibly imagine, but in the end she lost her earthly battle and the Lord welcomed her home on a Good Friday at the young age of 34. Along her treatment journey Maureen met other patients like herself, but many were not fortunate to have the financial resources to afford treatment as well as maintain their normal household bills. Maureen told family and friends that she would like to help patients like herself who were having financial troubles because of their brain cancer. Thus Mission4Maureen was born. Larry Walker (Maureen’s father) is the President of Mission4Maureen. He commented: “It is said that time heals all pain, but losing my daughter was so painful I don’t believe that grief will ever go away. I can only cherish the memories of the short time I had with Maureen and remain connected to her by carrying out her legacy which is to help others who are fighting brain cancer.” Mission4Maureen works in Maureen’s 124
Above: Maureen Lowis (1970 – 2005), whose brain tumor journey inspired the founding of Mission4Maureen.
memory to help other families who are similarly afflicted and dealing with the financial hardships that are created through needing brain surgery, treatment and medication. Each year hundreds of thousands of people are stricken with brain tumors. Though not as large a patient population as other cancer groups, the emotional and financial turmoil is often more than a family can bear. Mission4Maureen strives to help qualifying families in crisis so that they can concentrate on treatment and recovery. Mission4Maureen assists patients with their most urgent household and medical expenses by paying bills from verified vendors on behalf of patients. Applicants’ cases are verified through their doctors, hospitals and social workers and applicants must demonstrate financial need through an application process. Mission4Maureen began as a very small grass roots organization, but it has assisted families in 43 states across the country. The organization is proud of the fact that over the past five years it has distributed more than half a million US Dollars in assistance to this extremely underfunded
patient community. This milestone has been accomplished through grants, fundraisers and individual donations from loyal public supporters. Eighty percent of the organization’s spending since it was first established in 2006 has been used to help families. Mission4Maureen has stopped many evictions and home foreclosures, and has paid hospitals, laboratories, doctors, pharmacies and more. Often patients need emergency assistance to pay for their basic utilities such as the supply of gas, water and electricity. Mission4Maureen has paid these companies to reinstate and maintain patients’ vital services. In this struggling economy, it has become very difficult for brain tumor families to stay afloat. Despite its success and steady growth, applications to Mission4Maureen always outnumber available funds. While research dollars are extremely important for finding a cure and better treatments for brain tumors, more financial assistance for those who are fighting so courageously now is crucial too. Donations are desperately needed to help these families make ends meet. For more information and to support Mission4Maureen by making a donation, visit their website at www. mission4maureen.org and view their video presentation at http://www.youtube.com/ watch?v=mPX_C2b_oJ0 n
Heading for a cure Maureen Daniels from the Gerry and Nancy Pencer Brain Tumour Centre in Toronto, Canada emailed us to say that they completed their annual “Head for a Cure 2011” 5Kms walk on 16th October 2011. 167 walkers completed 5 kms, making a contribution of 835 kms to the IBTA’s “World Walk” total. n
Hjernesvulstforeningen: the Norwegian Brain Tumour Association (NBTA) HJERNESVULSTFORENINGEN, the Norwegian Brain Tumour Association (NBTA), was created in 2009. In 2012 the Association’s annual meeting focussed on the patient’s “next of kin”, family members who may also be strongly affected by the patient’s disease. Family members, caregivers, and patients were all present at the weekend conference, which was attended by 120 people and held in Sandefjord, which is about 125 miles south of the capital Oslo. In addition to several presentations the participants viewed a thirty second television advertisement which promoted the Association’s national telephone helpline contact number. The number is answered on a rotational basis by a team of fifteen volunteers who meet twice a year to discuss their work. IBTA Co-Directors Denis Strangman (Australia) and Kathy Oliver (UK) were invited to attend and address the 2012 conference where they also displayed IBTA literature and explained its work to conference participants. At one stage during the conference the participants divided into small sharing groups of patients and caregivers to discuss a set of questions. Their discussions were consolidated and reported back to the conference.
The Norwegian Brain Tumour Association has worked closely with the Norwegian Cancer Society (Kreftforeningen) and its representative Sven Olaf Wold also participated in the conference. For further information, please see www.hjernesvulst.no or contact Hjernesvulstforeningen, Postboks 8 Sentrum, 0101 Oslo, email@example.com n
Above: Participants await the commencement of one of the sessions. The Annual General Meeting of the Association was also held Above: The Norwegian Brain Tumour Association
during the conference which took place in
distributes a range of printed materials. This is the
cover of one of them. Left: A scene from the promotional Norwegian television advertisement which was shown to participants at the Hjernesvulstforeningen conference in April 2012 Below: IBTA Co-Directors Kathy Oliver and Denis Strangman (centre left and centre right) with retiring Board members Peter Andreas Heuch (far left) and Hallstein Gravråk (far right) at the Conference.
Left: The Board of Hjernesvulstforeningen (Norwegian Brain Tumour Association/NBTA), April 2011 - April 2012 (left to right): Peter Andreas Heuch (Chairperson), Oddmund Garden, Ninni Øinæs Simpson, Jon Ryen, Hallstein Gravråk and Ester S. Reiersen. (Kristine Thingelstad not present)
Why long-term survivors? OUR cover story about Florence Marazia from New Jersey (USA) is bound to create some interest. As an 18-year survivor of an anaplastic astrocytoma, Flo belongs to a small group of people around the world who have beaten the odds and defied the statistics. We know that long-term survivors are out there. Al Musella maintains a section on the Virtual Trials website (www.virtualtrials.com) which contains the stories of long term survivors who have been diagnosed with different types of brain tumours. The late American singer and songwriter David M Bailey was a shining example, having survived with a glioblastoma multiforme (GBM) for 14 years. Texan neuro-oncologist Dr Virginia Stark-Vance, who was the first clinician to recognise the possible efficacy of Avastin for malignant brain tumours, has an interest in the subject, particularly in connection with those with a primary central nervous system lymphoma (PCNSL). She plans to undertake research about the subject in the future.
Above: Dr Virginia Stark-Vance stands in front of the IBTA banner at the 2011 Society for Neuro Oncology (SNO) conference. She is holding an audio version of a book written by one of her patients, Jerry D Kline, who is an eight-year survivor of a glioblastoma brain tumour.
What is relevant to long term survival? If you ask most clinicians and researchers what they think might be relevant to longterm survival they point to characteristics that have been indicated in some studies, e.g. younger age at diagnosis; level of fitness; genetic markers that are relevant to some chemotherapies; the location, grade and size of the tumour; extent of the original resection, etc. Some doctors will suggest that the long term brain tumour survivors are people who really had a low grade tumour which was originally misdiagnosed. This may have been the case many years ago when examination of the pathology might not have been very precise, or the tissue sample might have been an untypical sample, i.e. taken from a section of the tumour that is not fully representative, but it is perhaps less likely to be the case in recent times. This article is not a scientific analysis of long-term survivorship. That would take years of careful clinical study. Rather, this article is simply an observational discussion of what two long term survivors feel has helped them to cope on this journey and given them hope that they might beat the odds. We have also included brief summaries of their treatments, in their own words. We know there are others out there who have even written books on long term brain tumour survivorship (i.e. Dr Ben Williams), or had books written about them (such as Patti Gauvinâ&#x20AC;&#x2122;s book about her husband Ron). While we know that there are certain factors which may help contribute to a better prognosis, we really do not know why some brain tumour patients live far beyond what statistics tell us is a likely survival period. However, it may be possible that if people believe certain approaches to be beneficial in dealing with their brain tumour diagnosis then this might generate a less stressful mental and physical environment for them on their journey.
Two brain tumour patients describe their journeys The two people who agreed to be interviewed are Cheryl Broyles of Oregon, USA (firstname.lastname@example.org), and Kim Dennis of Missouri, USA (kdennis1977@ yahoo.com). Both of these long term survivors are involved in various approaches and treatment regimens. They also both happen to be women living in America but there are, of course, other long term survivors in other countries who send occasional postings to online discussion groups and who the IBTA has met at various conferences and through email correspondence. Our choice of two Americans does not indicate that the US is the only country where there are long term brain tumour survivors. KIM DENNIS, glioblastoma patient diagnosed in 2001
Above: Long-term survivor Kim Dennis who is from Missouri, USA.
Kim Dennis was 42 years old when she was diagnosed with a GBM in September 2001 and underwent further surgeries in 2005 and 2006. She said: â&#x20AC;&#x153;Originally, I had a craniotomy on September 13, 2001, followed by radiation for six weeks that ended in December. With MRIs every two months thereafter, I had no sign of
recurrence until a questionable MRI in January 2005. We followed with another MRI in 30 days that confirmed recurrence in the same location at the base of the tumor bed. “At that point I began a trial of Tarceva and carboplatin for six weeks. Upon return to the neuro-oncologist, we determined the trial had failed and that a second craniotomy would be required. So, toward the later part of April 2005, I underwent my second craniotomy. “We also learned I qualified for a trial whereby (if I was randomly selected for the experimental treatment arm), one week after the surgery, they would take me back to surgery, implant between two and four catheters into my brain and infuse a trial drug, IL-13, directly into the tumor bed over 96 hours. Fortunately I was selected for the experimental treatment arm. One week after my second operation, I went back to surgery where they placed three catheters around the tumor bed and over the next four days, infused 72 ml. of the drug directly into my brain. “I tolerated it well and although I needed to stay in rehabilitation for some time after my return home, I seemed to do well. Then, in April 2006, on our regular check-up visit, there was another recurrence of the tumor. Again, it was in the same location, this time at the top of the tumor bed and just at the posterior portion. “This meant another surgery. Preoperatively, we were told that I would likely lose the use of my right arm and leg if my neurosurgeon was aggressive in going after the tumor. We told him to get the cancer. Immediately after surgery, I was able to raise my arm and leg. Post-operatively, I went on Temodar and Accutane for 24 months. I came off them for six months and then went back on the Accutane for another 18 months. I have been cancer free to today. “Currently, I have MRIs every four months. Due to the location of the tumor, the surgeries and radiation, I have some residual effect with some weakness of mostly my right leg. My right arm is affected with mild weakness. I use a three-wheeled walker for stability and independence, and drive and do the
things I want to do. But, I also know my limitations.” CHERYL BROYLES, glioblastoma patient diagnosed in 2000
Above: Long term survivor Cheryl Broyles with IBTA Chair Denis Strangman at a patients’ conference in Oregon, USA in 2009.
The other patient we interviewed is Cheryl Broyles who is 45 years old and a former wildlife biologist. She self-effacingly describes herself as “a middle aged person physically, but with a very old, worn out brain.” Cheryl was 33 years old in 2000 when she was first diagnosed with a GBM which has since been re-confirmed by subsequent surgeries in 2004, 2007 and 2009. Cheryl’s treatment has been a little more traditional than Kim’s by today’s standards. Cheryl said: “In the first three surgeries, the tumor was located as a solid mass in the surface of the left temporal lobe (each recurrence was on the perimeter of the tumor cavity). In 2009 the tumor actually showed up in the meninges (not in the brain itself). Again, along the edge of the tumor cavity in the meninges. In 2007 they did a few genetic tests - P53 negative, and EGFR negative. In 2009 EGFR negative, EGFRviii negative, PTEN:2 26-75% immunoreactivity of cells, PTEN:3 76% (whatever that means!)” Cheryl’s major milestones have been: n 2000 - surgery and conformal radiation n 2004 - surgery and Temodar for one and a half years n 2007 - surgery and Temodar for two years
2009 - surgery. Cheryl told us that she takes supplements (which she lists on her website) but on the other hand, when we asked Kim if she took any complementary treatments she replied with a simple “No”. n
More research is needed When asked why she felt she was a longterm survivor, Cheryl responded: “WISH I KNEW! It breaks my heart when I lose another loved brain tumor friend. I wish I knew why I am a long term survivor, and others pass so quickly.” Other benefits which one or the other of the two women said may have helped them on their journey were exercising, having a supportive family and friends and having excellent healthcare and good medical insurance. Both Kim and Cheryl attributed their long term survival to their God. Equally, we know that other long term survivors prefer to emphasise other aspects of their life as providing coping mechanisms and these might not include strong faith. It would be interesting to study longterm survivors and their treatments, use of complementary therapies and general attitudes and beliefs, perhaps via the use of a “real world patient registry” where patientreported outcomes include a wide range of information above and beyond that which is usually obtained from traditional clinical trials. Of course, real world patient registries must also satisfy the same stringent requirements that population-based or hospital based registries do in terms of accuracy, data protection, timeliness, accessibility, good leadership and welldeveloped consent mechanisms. n
At least 200,000 people worldwide will develop a malignant primary brain tumour this year and most will not receive an appropriate standard of care. Source - IBTA commissioned research.
Brain tumor patients and fatigue: a word from the wise The following is a message (reprinted with permission) from long term brain tumor survivor Cheryl Broyles (USA) who was diagnosed with a glioblastoma multiforme 12 years ago. (See also the previous article about Cheryl.) Cheryl posted this message on an online forum in response to a discussion there about fatigue. Readers will find her observations very interesting and her suggestions for helping to cope with fatigue very useful. Left: Photo taken the day after Cheryl’s last brain tumour surgery in March 2009
From: Cheryl Broyles Subject: Chemo fatigue (physical vs brain fatigue)
To: xxxxxxxxx Sent: Monday, April 23, 2012 11:41 AM
Sorry I did not respond sooner. Too busy lately! After reading your question and others responses about chemo fatigue, I wanted to take time to write a more detailed response. But still limited on time today, so I’ll make it short (ended up not being short!) Over the last 12 years of battling the Glioblastoma Multiforme, I realized that it is not just “physical” fatigue that hits us patients. Yes, the chemo makes us weak and tired, but it is more than that. I’ve been off all treatment for three years now (my last brain surgery and Temodar was back in 2009). So I have been chemo free for over three years now. And I still get VERY fatigued. I used to think of it mostly as “physical” fatigued. Because I would feel so worn out I would need to take a nap in the afternoon before my two boys got home from school. Some days I felt great and perky, with my brain working clear. Then another day I would feel fatigued and like a vegetable and would just curl up on the couch, not having energy to do anything. I was SO frustrated thinking “why do I have good days and bad days?” Then I started seeing a speech therapist (because I was having a harder time understanding what people were saying, because of background sounds distracting me). She gave me info that opened my eyes! The fatigue I was getting was not “physical” fatigue, but “brain” fatigue! My neuro-oncologist told me years ago that my brain (after treatment damage) is like an 80+ year old lady (I’m only 45). I remember wondering years ago why my grandma was always in her PJs by 4pm in the afternoon, and she was too worn out to do much. Now I know why! Our brains get tired. For us with brain tumors, and the damage from the tumor and the treatment, it makes it VERY difficult to do the normal “thinking”. Normal” people THINK about things easily. For us brain tumor patients, it is like a mental marathon just thinking about what to buy at the grocery store! So it is our brain getting over stimulated that causes us to break down and be fatigued. Our brains just shut down. After keeping a journal of my good and bad days, I realized that my bad days, where I feel like a veggie, is the day after I have a busy and noisy day. My brain needs to recover. Like a person after running a marathon race needs to take a break to recover their muscles. We brain tumor fighters need to recover from over working our brains! We will lay on the couch like we are worn out, because our brains have shut down!! SO don’t be surprised if your loved one is still all fatigued and tired, even though the radiation and chemo is over. They will be that way the rest of their life. It is “brain fatigue”, not physical fatigue from chemo. The KEY is to learn how to work around it! I have realized I have about four hours a day of “sharp” brain function, then it goes downhill fast. So if I want to be perky and thinking straight for a dinner event some evening, I need to make sure I have a VERY quiet relaxed day before that evening, so I can have the perky energy and brain function to talk and be part of the event. If I go grocery shopping (which takes a lot of thinking and background noises), then I would be a veggie that night at the event. My hardest days are the weekends when my two boys and husband are at home with me all day on Saturday and Sunday. I LOVE being with them and having fun, but the busy sounds of talking, doing, interacting, thinking, noises from my boys, etc. WEARS my brain
down. Monday is recovery day for me! I NEED hours of complete silence each day. So please, you caregivers understand, that your loved one needs some QUIET time each day to give their brains rest! We are not “normal” anymore. We will not get back to “normal”. Sometimes I need to “do” something in the morning, like go to a kids event at school. If I do, I need to come home after the event, and have COMPLETE SILENCE for a few hours to recover from the over-stimulation in my brain, so that later that day when my husband gets home from work and boys from school, I can be functioning again that evening. Like I said, I think many patients (or caregivers) don’t realize that our brains are fragile. Treat them gently! We can only handle so much “thinking” in a day. ANY background sounds, over stimulation, big groups of people talking, etc. is way hard on us!
In the past I often reacted to my “over stimulation” by depression, wanting to be alone, not wanting to interact with other people. But now I realize that I fell into the fatigue and feeling bad, because I was “allowing” myself to be over-stimulated too much! Now I have learned to work with what I’ve got, an old worn down brain. So by giving me my QUIET time needed, my brain and body can work MUCH more perky and clear, the hours I really need it. OK, sorry for going on and on. I just wish I had known this YEARS ago! This June will be 12 years for me since my first GBM brain surgery. I wish I knew years ago I “have limits” on what my brain can accomplish in a day. It does not have to be BAD every day, my brain can work VERY well, if I make sure I get the QUIET time I need to let my brain recover from over-stimulation. Sorry, I’m not sure I explained it well. I just wanted people to know, often what we brain tumor people have is NOT physical fatigue, but BRAIN fatigue, and you can make it better by understanding your limits and working around them. If the patient has young children at home making lots of noise running around, PLEASE give the patient some quiet time with no T.V. noises, etc. I’ll try to take some time and update my web page with something about this and what I have learned. Wish I had known this years ago! My fingers hurt, got to go. God Bless, Cheryl Broyles “Rejoicing in hope, patient in tribulation, continuing steadfastly in prayer.” Romans 12:12
12 Years GBM survivor Dx GBM left temp lobe 2000 - Surgery complete resection OHSU / radiation UCSF GBM back 2004 - Surgery “awake” complete resection Dr. Berger UCSF / Temodar 5/23 1.5 years GBM back 2007 - Surgery “awake” complete resection Dr. Berger UCSF / Temodar 5/23 2 years GBM back 2009 - Surgery complete Dr. Berger UCSF Currently no meds / lots of supplements (see list on my web page) Last MRI Oct 2011 looked clear
Every penny can make a difference Sheffield Hallam University graduate Hayley Toothill, her boyfriend Dan Taylor and Hayley’s sister, Teresa Tomlinson, completed a 20-mile walk around Earby in Lancashire, England to raise awareness and funds for the Sheffieldbased fundraising group Sophie’s Wish. Hayley, whose mother died from undiagnosed secondary brain tumours in 2005, wanted to do something productive in her mother’s memory and
at the same time raise funds for Sophie’s Wish. The three energetic walkers managed to complete 60 miles between them and these were donated to the IBTA’s “Walk Around the World for Brain Tumours”. They raised £408 for Sophie’s Wish, part of the UK national charity Brain Tumour Research. Hayley said: “Every penny can make a difference, so I thought it right to do my bit in helping raise money for a worthwhile cause.” Here is a photo of Hayley and Dan. n
Research 101 for brain tumour patients and carers THE IBTA receives enquiries from patients and caregivers around the world. We can’t offer medical advice or funds for medical expenses unfortunately. One of the common types of enquiry comes from people who are desperate to discover if there is “something else out there” that could help their loved one. This might be their first attempt at research of any kind. We cannot undertake the research for them but we can give them some guidance as to how to go about researching in the recognised databases. The following is an anonymised sequence of emails between the IBTA and a mother in North America. Some readers might find the advice useful. n
The enquiry: From: xxxxxxxx Subject: Anaplastic Oligodendroglioma
To: email@example.com Sent: Monday, 2 January 2012 5:52 AM
xxxxxxx Is there a world expert/centre for this malignant tumour type? I have tried to search by tumour type/brain tumour treatment centre/survival rates, but to no avail. Wouldn’t this information be valuable to patients and family? Which brain tumour centres have the longest rates of survival? Which brain tumour centres will disclose all experimental treatments that may be available to their patients at the beginning of treatment? So many patients are offered experimental treatments only after ‘standard of care’ has failed at which point they are physically and mentally worn down. Which brain tumour centres will give their patients a choice (standard or experimental) right at the get-go? Which brain tumour centres are considered the world’s leading-edge centres? We live in Xxxxxxx where our daughter’s (age 25) treatment is given under provincial government’s approved ‘standard of care’. We are so fortunate to have access to a major medical facility known as (the) Xxxxxxxxxx at Xxxxxxxx Hospital, but, as you know all too well, the ‘standard of care’ doesn’t do much for this disease. It’s so frustrating. “Insanity is doing the same thing, over and over again, but expecting different results” (B.Franklin). Would appreciate IBTA’s insights as to which brain tumour centres and/or oncologists are considered the most progressive, leading-edge in the world.
The UK’s largest brain tumour charity We are proud to be... The biggest dedicated funder of AMRC accredited world class research A UK wide provider of support for thousands of people through Information Days, our website and national helpline The charity reducing diagnosis times for children and young people through:
www.braintumourtrust.co.uk Samantha Dickson Brain Tumour Trust Registered Charity No. 1128354
The response: From: firstname.lastname@example.org Subject: Re: Anaplastic Oligodendroglioma
To: xxxxxxxxx Sent: Monday, 2 January 2012 10:52 AM
Dear Ms Xxxxxxx, Thank you for your email. I am sorry to read about your daughter’s diagnosis, brain tumours can be a devastating disease but oligodendrogliomas have a better prognosis than, say, glioblastomas, as I am sure you have discovered by now. I can understand your desire to find out as much information as possible about oligodendrogliomas. My late wife was diagnosed with a glioblastoma and I knew nothing about it in the first month until I did some research. As far as I am aware, there is no world centre or one single expert for anaplastic oligodendrogliomas (oligos). Much of the research involving oligos is within glioma research - in tandem with oligoastrocytoma research - where there is a focus on glioblastoma multiforme. However, I am sure there are researchers who have focussed or are focussing on oligos. If you wish to undertake some research and really want to arrive at an answer to your main question I would suggest that you start with the Pubmed website: http://www.ncbi.nlm. nih.gov/pubmed/ and enter the search term “anaplastic oligodendrogliomas” (without the quotation marks). It will generate 3,763 citations. You will then need to browse the citations looking for authors and centres that appear to have frequent entries. That will narrow down the field and provide clues of names and locations. Bear in mind that even though you are in North America the relevant expertise might be found somewhere in Europe or Japan, or elsewhere in the world. Another resource to search is the clinical trials website: www.clinicaltrials.gov If you enter “anaplastic oligodendroglioma” you will generate 226 references but some of the trials listed there will be closed or completed. Those results can help you prioritise the results of the PUBMED search. Eventually you will end up with a short list of ten or so researchers or centres. Try and ensure they are involved in current research, not research undertaken ten or fifteen years ago. If you do not have access to the full text of what appear to be important articles, email the principal author seeking a copy and explaining your reason. Most authors will oblige and send an electronic copy and they might also point you in the direction of a fellow researcher or relevant studies that have not yet been reported in the literature. Many, however, do not have the time to engage in protracted communications. Having said all of the above, I am familiar with the Xxxxxxxx Hospital and they are among the best brain tumour resources in the world. I am sure your daughter’s oncologist would already have an indication of who might be undertaking research in this area so you should enter into partnership with them by telling them that you intend to research internationally. For example, you might identify a trial or a project that appears to have promising results but your daughter’s oncologist might be aware of something not apparent to you that reduces its potential efficacy or reliability. There are at least 120 different types of brain tumour and most centres will only offer what has been identified as the appropriate “standard of care”, of which you are obviously aware. They cannot offer access at their centre to every promising therapy or current trial for every type of brain tumour. I wish you all the best with your enquiries. Kind regards
Response from the enquirer: From: xxxxxxxxx Subject: Re: Anaplastic Oligodendroglioma
To: email@example.com Sent: Monday, 2 January 2012 13:52 PM
Thank-you so much for your detailed response. Your research tips/guidance are much appreciated.
Brain tumour organisations offering support and information* (*The IBTA cannot be held responsible for the content of other organisations’ websites included in the list below.) n Accelerate Brain Cancer Cure (United States)
n Angels Among Us (United States)
n Barbara di Stase Memorial Walk (United States)
Accelerate Brain Cancer Cure has a singular focus - to
The Angels Among Us 5K and Family Fun Walk is a
Raises funds for brain tumour research and support.
hasten the discovery of a cure for brain cancer.
celebration of life, strength, courage and commitment. This
volunteer organization was established to support the mission of hope at the Preston Robert Tisch Brain Tumor
n Ben and Catherine Ivy Foundation (United States)
n ACT Brain Tumour Network (Australia)
Center at Duke University (Durham, North Carolina).
The objective of the US-based Ben and Catherine Ivy
The ACT BT support network meets on the 4th Sunday
Foundation is to fund research that will offer brain tumor
of the month at Woden Southern Cross Club, Canberra. Convened by Susan Pitt and MaryAnne Rosier under the
for a long term, high quality life.
auspices of Brain Tumour Alliance Australia (BTAA).
n Anna’s Hope (United Kingdom)
Email firstname.lastname@example.org or call Susan Pitt on 0404255156 for more information
Anna’s Hope is a charity dedicated to giving hope to
children and young people diagnosed with a brain tumour.
n Benny’s World (United States)
It was inspired by Anna Olivia Hughes who tragically died
Benny’s World is a 501(c)(3) non-profit foundation
n Addi’s Faith Foundation (United States)
from a brain tumour aged only three years and eight
established to fund research to find a cure for pediatric
This foundation was created to help fund pediatric brain
months and was set up by Anna’s parents, Rob and Carole
brain stem tumors, specifically targeting diffuse intrinsic
tumor research as well as provide financial assistance to
Hughes and her five Godparents in 2006.
pontine glioma (DIPG). Benny Watters was diagnosed with
families who need help caring for their sick child.
a DIPG on January 18th, 2008 a few months before his 3rd
www.addisfaithfoundation.org n Adult Brain Cancer Support Association
n ARTC Sud (France)
his tumor, our sweet Benny passed away. This foundation
Ce site s’adresse à tous ceux qui souhaitent s’informer sur
was established in March 2008 by his family.
les tumeurs cérébrales cancéreuses et sur la recherche
The ABC Support Association is located in South Australia
en neuro-oncologie et à ceux qui désirent faire progresser
and is focussed on giving support, encouragement, help
n Beyin Tumori Tedavisi (Turkey)
and guidance to adults diagnosed with brain cancer, their
Turkish brain tumour support group.
birthday. On September 8th, 2010 after 33 months battling
families, friends and carers.
Contact: Andy Stokes. email@example.com
n Association Española de Afectados por Tumores Cerebrales - ASATE
n Brad Kaminsky Foundation (United States)
n Adult Ependymoma (Web-based)
The Brad Kaminsky Foundation seeks to raise awareness
A website dealing primarily with adult ependymomas.
Spanish association for people affected by a brain tumour,
of brain tumors, to raise funds for research, and is also
based in Madrid.
dedicated to providing support and resources to those
affected by this disease.
n Alinoe (France)
Alinoe (Association Lilloise de Neuro-Oncologie) is a patient-
n Association Léa Princesse Eternelle
oriented organisation providing information and support
n Brain and Spine Foundation (United Kingdom)
to brain tumor patients and their families in the Lille area
Léa est notre fille décédée le 10 juillet 2007 à l’âge de
The Brain and Spine Foundation seeks to develop
(north of France).
5 ans des suites d’une tumeur cérébrale récidivante :
research, education and information programmes aimed
l’épendymome (cancer pédiatrique). A l’issue des deux
at improving the prevention, treatment and care of
années de maladie, nous gardons tous dans nos pensées
people affected by disorders of the brain and spine and
n Ali’s Dream (United Kingdom)
l’image d’une petite fille souriante, joueuse, courageuse
to stimulate the greater allocation of resources across all
A UK-based charity established to raise funds for research
et généreuse. Afin de poursuivre son combat contre la
into childhood brain tumours.
maladie, nous, parents de Léa, avons décidé de créer
www.alisdream.f2s.com n American Brain Tumor Association
l’association «Léa Princesse Eternelle».
n Brain Candy Project (United States)
http://leapourlavie.free.fr/ n Astro Fund
Founded in 1973 out of a desperate need, the American
who are recovering from brain tumours and other
Brain Tumor Association exists to eliminate brain tumors
A UK organisation offering information, inspiration and hope
through research and to meet the needs of brain tumor
to all those living with a low-grade brain tumour.
patients and their families.
www.astrofund.org.uk n Australian Pituitary Foundation
www.braincandyproject.org n b.r.a.i.n.child (Canada)
www.abta.org/index.cfm n Andrew McCartney Trust Fund
patients a wide choice of effective treatments that provide
The Brain Candy Project aims to support the needs of parents/guardians living in the hospital with their children
b.r.a.i.n.child is a group of parents, family, and friends
The APF’s mission is to provide support to those who
who have the common experience of caring for a child
have experienced pituitary gland conditions. We promote
with a brain tumour or who are survivors. We are a
Funds scientific and medical research into the causes
awareness and disseminate information among the
volunteer organization providing support, education, and
of brain tumours, and builds public awareness of the
medical community, public, pituitary patients and
challenges of this disease.
n BrainLife (Web-based)
n Brain Tumour Action
BrainLife collects and offers to brain tumor patients,
n Brain Tumour Support and Information Across Yorkshire - incorporating Andrea’s Gift (United Kingdom)
caregivers and medical/health professionals, references to
A voluntary group based in Scotland which concentrates on
Brain Tumour Research and Support across Yorkshire aims
the latest published medical sources in the field of brain
support, counselling, education, information and research.
to provide a network of support across Yorkshire for brain
(and other CNS) tumor research and treatment. Information
tumour patients and their families. In 2003 Andrea’s Gift
is from peer-reviewed journals and medical databases.
registered as a charity with the sole aim of funding research
Some meeting proceedings are included too. The sources
n Brain Tumour AhoyHoy
and providing improved patient support for anyone affected
(abstracts, references and full-text articles) are republished
by a brain tumour in Yorkshire. The charity changed its
with their original contents.
Brain Tumour AhoyHoy’s mission is to provide information,
name from Andrea’s Gift to BTRS in 2011.
support and awareness for patients, friends and family who
have or have previously had a low grade brain tumour. Let
n Brain Science Foundation
us provide you with a safe harbour to drop anchor, where
you can laugh, cry and just be yourself.
n Brain Tumour Support Group - Cancer Council Queensland (Australia)
The Brain Science Foundation works to find a cure for
This brain tumour support service provides information
primary brain tumors by advancing the understanding of
about brain tumours and treatments; referral to support
brain function and patient care. The foundation supports
n Brain Tumour Alliance Australia
and rehabilitation services as well as practical and financial
cutting edge research in all areas related to primary brain
Brain Tumour Alliance Australia (BTAA) is the only national
assistance; and regular meetings that give opportunities to
tumors, from developing and testing new treatments,
brain tumour patient and caregiver organisation in Australia.
meet other people dealing with a brain tumour and hear
epidemiological studies, improvements in patient care, and
www.btaa.org.au n Brain Tumour Association (Australia)
health professionals discuss topics of interest.
The Brain Tumour Association (Western Australia) is a
n Brains on Bikes
support group for patients and caregivers.
Brains on Bikes is dedicated to raising brain cancer
n Brain Tumour Support Group St Thomas’ Hospital, London (United Kingdom) Everyone is welcome to join this brain tumour support
awareness and funds for research and better patient care.
n Brain Tumour Barcelona (Spain)
group in London to be held at the Dimbleby Cancer
This Spanish brain tumour support group has been started
Centre in St Thomas’ Hospital, London, UK. This group
recently by Elisabeth Ros, a medulloblastoma survivor, with
meets on the first Monday of each month and is aimed
n Brain Tumor Awareness Organization
the collaboration of Fondo Alicia Pueyo (a fund for research
at patients, families and friends of those diagnosed with
on childhood brainstem gliomas).
a brain tumour.
The Brain Tumor Awareness Organization is an on-line
Contact Elisabeth Ros at elisabethrosmansilla@ yahoo.es
For more information contact Jamie Logan on 020 3229 4151.
n Brain Tumour Foundation of Canada The Brain Tumour Foundation of Canada is the major non-
n Brain Tumour UK (incorporating the Joseph Foote Trust)
n Brain Tumor Foundation for Children Inc
governmental brain tumour organisation in Canada.
Brain Tumour UK is committed to fighting brain tumours. Our
personalised support is available online, on the phone, by
resource for raising brain tumor awareness and gaining support.
The Brain Tumor Foundation for Children Inc is a Georgia
email and through support groups. Our scientific research
(US) based support, information and fund-raising
n Brain Tumour Foundation of India
improves the quality of life for brain tumour patients and
organisation for children with brain tumors.
The Brain Tumour Foundation of India is a charity
identifies better treatments. We raise awareness to change
concerned with improving the care and treatment available
things for the better, for everyone affected by a brain tumour.
to people with brain tumours and their families. They work
n Brain Tumor Fund for the Carolinas
in partnership with other organisations to develop and
support services for people with brain tumours. They hope
www.braintumouruk.org.uk n Brains Together for a Cure (United States)
The Brain Tumor Fund for the Carolinas (BTFC), is a
to help all patients in and around Bombay and expand
Our mission is to promote awareness of brain tumors and
not-for-profit organization founded in 2003 by Charlotte
their services to involve the whole country.
the need for effective treatments.
neurosurgeon, Dr. Tony Asher and retired Bank of America
the impact of brain tumors and to providing support for
www.braintumourindia.com/introduction.htm n Brain Tumour Foundation of South Africa BTFSA
the development of treatment strategies and cooperative
(Brain Tumour Foundation of South Africa) is a charity
care for brain tumour sufferers and providing coordinated
biomedical research related to brain tumors in the
trust that has been set up to assist patients, carers and
support in their search for treatment. Brainstrust has also
the public with relevant information on brain tumours in
developed the “braintumourhub” at www.braintumourhub.
South Africa. It is our aim to unite people affected by a
org.uk which is an online database of brain tumour
brain tumour in order to engage, encourage and empower
support and brain tumour advice services available
patients and their families.
nationally in the UK.
executive, Jim Palermo. The Brain Tumor Fund for the Carolinas is dedicated to increasing public awareness of
n Brain Tumor Resource and Information Network - B.R.A.I.N. (United States)
n Brainstrust (United Kingdom) The Meg Jones (UK) charity dedicated to improving clinical
is a volunteer non-profit 501(c)3 organization dedicated
n Brain Tumour Research (United Kingdom)
www.brainstrust.org.uk n Brainwaves Brain Tumour Support Group
to improving the quality of life of brain tumor survivors,
Brain Tumour Research represents the united campaign
increasing public awareness, and raising funds to aid in
voice of the Brain Tumour Research group of UK charities
Brainwaves offer the opportunity to meet other people with
research to eliminate the disease. They are based in the
and was launched specifically to raise substantial funds for
similar experiences and to find out information about all the
Richmond, Virginia area.
brain tumour research.
issues relating to brain tumours.
Brain Tumor Resource and Information Network (B.R.A.I.N)
n Brainwaves NI (Northern Ireland)
n CHANCE - Children AgaiNst CancEr (Lebanon)
n Dr Marnie Rose Foundation (United States)
Brainwaves NI is a Northern Ireland based charity dedicated
CHANCE (CHildren AgaiNst CancEr) is a Lebanese association
The Dr Marnie Rose Foundation funds brain tumour
to providing support and information to people affected by
whose mission is to help Lebanese children with cancer or
research at MD Anderson in Houston, Texas (USA).
a brain tumour.
blood disorders receive the best chance for cure and accept
http://chancelebanon.org/about-chance/ n Brian Bedell 2 Young Foundation
n Ed Evans Foundation (United Kingdom) The Ed Evans Foundation, in memory of 27 year old Ed Evans who passed away in 2007, is based in Wales, UK,
The 2 Young Foundation was founded in 2004 by Brian
n Charles Warren Brain Tumor Awareness Foundation (United States)
Bedell and continues to grow each year in his honor. 2YF is
The Charles Warren Brain Tumor Awareness Foundation,
a non-proft (501c3) charitable organization that is dedicated
based in Georgia, USA, seeks to “significantly raise
to caring for families and patients affected by brain tumours,
awareness of the disease of brain tumors so that a cure
n Ellie Savage Memorial Trust
connecting communities to generate public awareness, and
can be found more quickly”. It directly supports the Preston
committing funds to further research in curing this disease.
Robert Tisch Brain Tumor Center at Duke University.
The Ellie Savage Memorial Trust has been founded to help
families living in East Anglia (UK) who have a child with
n British Acoustic Neuroma Association - BANA
n Charlie’s Challenge (United Kingdom)
Charlie’s Challenge is a UK-based charity which raises
BANA is organised and administered by people affected
money to finance urgently needed research into children’s
n Emory Brain Tumor Support Group
by acoustic neuroma; is a registered charity and exists for
mutual support, information exchange and listening.
The Emory Brain Tumor Support Group (Georgia, USA)
www.bana-uk.com n BT Buddies (United Kingdom)
n Childhood Brain Tumor Foundation
among patients diagnosed with a brain tumor, be it
malignant, benign or metastatic.
A UK group offering information, inspiration and hope to all
The Childhood Brain Tumor Foundation of Maryland
those living with a high-grade brain tumour.
“supports and funds basic science or clinical research for
childhood brain tumors”.
n Ependymoma Online Support Group (Web-based)
n BT Survivor group (Web-based) A site dedicated to discussing survivorship, treatment
www.childhoodbraintumor.org n Childrens Brain Tumor Foundation
options available now and those options on the horizon
group is hosted by T.H.E. Brain Trust. The size of this group
that show promise.
The NY-based CBTF, founded in 1988, seeks to “improve
is consistent with the rarity of ependymomas in adults.
the treatment, quality of life and the long term outlook for
Our tight-knit, online community is a strong emotional and
children with brain and spinal cord tumors...”
medical support system.
precautionary principle, outreach, and education.
www.cbtf.org n Chris Elliot Fund for Glioblastoma Brain Tumor Education, Awareness, Advocacy and Research
research and support activities in honour of 20 year
The Chris Elliott Fund for Glioblastoma Research (CEF) is a
old Lauren M Fitzgerald who passed away in 2005.
n Canadian Alliance of Brain Tumour Organisations
non-profit organization that raises funds specifically aimed
Funds are administered through the Berks County
The Canadian Alliance of Brain Tumour Organizations
at ending brain cancer through education, awareness,
(CABTO) is an alliance of volunteer organizations, dedicated
advocacy and research.
to enhancing the quality of life of brain tumour patients
and raises funds for cancer and brain tumour charities.
cancer or a brain tumour by providing financial support.
n California Brain Tumor Association (United States) The California Brain Tumor Association is dedicated to advancing brain cancer research efforts, employing the
provides an opportunity for information-sharing and support
The Adult Ependymoma Online Support Group is a private email list consisting of over 100 patients and caregivers. The
n Fitzy’s 5 km Run/Walk (United States) This annual run/walk raises funds for brain tumor
n Florida Brain Tumor Association
n Clowns in the Sky (United Kingdom)
Clowns in the Sky is a small, registered charity which
Our mission is to provide hope, support and education to
n Central Brain Tumor Registry of the United States
supports children with brain tumours and their families
brain tumor survivors, their families and friends; to conquer
The Central Brain Tumor Registry of the United States,
across England. They provide activity and portable sensory
brain tumors by funding research into their causes and
CBTRUS, is a not-for-profit corporation committed to
trolleys in oncology wards and shared-care units in many
cures; and to enrich the quality of life of those touched by
providing a resource for gathering and disseminating current
epidemiologic data on all primary brain tumors, benign
their incidence and survival patterns, evaluating diagnosis
n Cyprus Brain Tumour Association
n Fondo Alicia Pueyo (Spain)
and treatment, facilitating etiologic studies, establishing
The CBTA is a brain tumour organisation for patients
This Spanish organisation was created with the mission
awareness of the disease, and ultimately, for the prevention
to promote and support research on childhood brainstem
of all brain tumors.
tumors in order to develop new treatments and drugs
and malignant, for the purposes of accurately describing
that may offer an early cure for all children affected by this
n Deutsche Hirntumorhilfe eV (Germany)
n Central New Jersey Brain Tumor Support Group CNJBTSG (United States)
A non-profit, German-based independent organisation,
Meets in North Plainfield, New Jersey. For further information
oncological research and the improvement of medical
n GentleGiant (United Kingdom)
health care for brain tumour patients.
GentleGiant UK is a website devoted to pituitary tumours.
which raises funds for the advancement of neuro-
n Gerry and Nancy Pencer Brain Tumor Centre
n Healing Exchange Brain Trust
n Jeffrey Thomas Hayden Foundation
The Gerry and Nancy Pencer Brain Tumor Centre is
Provides support services for people affected by brain
The Jeffrey Thomas Hayden Foundation is a registered non-
dedicated to improving the lives of people living with
tumors and related conditions.
profit 501c(3) US-based organization dedicated to helping
www.braintrust.org n Hersentumor.nl
kids affected by cancer.
n Joe di Palma Brain Tumor Foundation
A patient-oriented organisation in the Netherlands whose
The US-based Glio-Blastoff 5K Fun/Walk has been created
aim is to prevent and cure brain tumours.
The Joe Di Palma Brain Tumor & Pediatrics Foundation is
to raise money for brain tumour research.
dedicated to raising money for charities that are focused
www.braincancer5k.com/index.html n Glioblastoma Fundation Michèle Esnault - GFME
Foundation is based in Vaughan, Ontario.
(Norwegian Brain Tumour Association/NBTA)
The NBTA was created in 2009 and is a national group,
Glioblastoma Fundation Michèle Esnault (GFME) is a French-
providing brain tumour patients, their families and
n Just One More Day
speaking group for brain tumour patients.
caregivers in Norway with information and support.
Hjernesvulstforeningen er til både for pasient og pårørende.
Just One More Day is committed to providing information
Vi etablerte i januar i år en kontakttelefon, der du kan
and support for families affected by diffuse intrinsic
n Glioma Online Support Group
snakke med folk som selv har eller har hatt hjernesvulst, og
The international forum dedicated to those affected by low
http://www.uhn.ca/about_uhn/programs/pencer/ who_we_are.asp n Glio Blast Off (United States)
on helping adults and children with brain tumors. The
n kartu lengviau
n Hjernetumornet.dk (Danish Brain Tumour Association)
Vi er et netværk for patienter der har og har haft
brain tumour patients and their carers in Lithuania.
n Gray Matters Foundation (United States)
hjernetumor og deres pårørende. Her har du mulighed for
The Gray Matters Foundation is a 501(c)(3) organization
at udveksle erfaringer med og få støtte fra andre der står i
The first and the only Internet page and support group for
whose mission is to support and empower people
n Katie McKerracher Trust
impacted by brain tumors through outreach, awareness and
(United Kingdom) Katie’s Trust wants to help children with a diffuse
n Il Fondo di Gio ONLUS
pontine glioma by supporting patients and parents
with finance and advice, providing access to healing/
n Grey Matters (Australia)
Il Fondo di Gio ONLUS is an Italian brain tumour charity
alternative therapy and investigating/supporting research.
A new support group for those living with a benign and
named in honour of Gio, the young son of Francesca
The Trust also provides some financial assistance to
low grade brain tumour. Grey Matters is affiliated with
Scropetta, who passed away from a brain tumour.
dancers from the Scottish Borders studying dance in
Cancer Council Victoria and associated with Melbourne
n IRENE Onlus
Hospitals (including Royal Melbourne and The Austin).
n Hammer Out (United Kingdom)
L’associazione IRENE Onlus è stata fondata alcuni anni fa
At Hammer Out we seek to offer help to people whose
per iniziativa di pazienti e familiari di persone affette da
n Kevin J Mullin Memorial Fund for Brain Tumor Research
lives have been affected by a brain tumour, by providing a
tumori cerebrali. Obiettivo dell’Associazione IRENE è quello
network of support for the whole journey.
di aiutare le persone che hanno ricevuto una diagnosi di
The Kevin J. Mullin Memorial Fund for Brain Tumor
tumore cerebrale e i loro familiari, ad affrontare i problemi
Research, based in the USA (Lancaster, Ohio), conducts
sia di natura sanitaria che psicologica e sociale che questa
an annual 5 km run/walk from which the proceeds go to
n Headcase (United Kingdom)
brain tumor research.
Headcase raises funds to provide research to find a cure
n Italia - Glioblastoma Multiforme cancro al cervello
n Kortney Rose Foundation
The Kortney Rose Foundation is a 501(c)(3) organization
n Head for the Cure Foundation
Italian glioblastoma Facebook website.
that is dedicated to raising funds to support research
and education related to the treatment and cure of
for the most common and aggressive type of adult brain tumour called a Glioblastoma Multiforme or GBM.
The Head for the Cure Foundation is a 501(c)3 nonprofit
pediatric brain tumors.
the fight against brain cancer.
n Japan Brain Tumor Alliance
Assisting brain tumour patients and families in Japan.
www.thekortneyrosefoundation.org/index.shtml n Legacy Brain Foundation
organization dedicated to raising awareness and funding in
n Head Start (New Zealand)
Our Mission is to support patients with brain or spinal
This organisation is intended to give sufferers in
n Japan Pediatric Brain Tumor Network
cord tumors in their communities through public
New Zealand a “head start” when they are battling
Helping pediatric brain tumour patients and their families
awareness, education, grants and services; creating a
better quality of life for patients and their families.
n Levi’s Star (United Kingdom)
n Meningioma UK
n Newro Foundation (Australia)
Levi’s Star supports children with brain tumours and their
The only UK organisation for support and information
The Newro Foundation is a not-for-profit organisation
families throughout Yorkshire. Our three objectives are:
for patients with meningioma tumours of the brain and
and registered charity seeking to develop new ideas and
1. The provision of grants and financial assistance; 2.
spine. Thirty per cent of all primary brain tumours are
new research for new hope in the fields of neurology,
Promoting research into centres for cures of brain tumours;
neurosurgery, spinal surgery and the neurosciences.
3. Raising awareness of brain tumour symptoms.
n Making Headway (United States)
This US group seeks to create hope, helping to live and
http://www.newrofoundation.com.au/ n Nick Gonzalez Foundation for Brain Tumor Research (United States)
Making Headway Foundation Inc. is a US (Chappaqua, NY)
celebrate life after diagnosis. They educate, offer emotional
The Nick Gonzales Foundation for Brain Tumor Research
based not-for-profit organization dedicated to the care,
support and provide resources.
was established in 2007 in honor of Nick, a loving
comfort, and cure of children with brain and spinal
husband, father, son, brother, friend and so much more. The
http://www.freewebs.com/levisstar/ n Michael G. Belz Foundation (United States)
Foundation concentrates on raising public awareness of the
n Michael Quinlan Brain Tumor Foundation/Brain Injury Association of Kentucky (United States)
early warning signs of brain tumours and it also focuses on
n Mark Linder Walk for the Mind
The Michael Quinlan Brain Tumor Foundation is dedicated
to empowering those persons who have been affected by
Mark’s goal was to create a place where brain tumor
brain tumors. It has recently merged with the Brain Injury
n Oklahoma Brain Tumor Foundation (United States)
survivors and those still fighting the battle can come and
Alliance of Kentucky (BIAK).
OKBTF is dedicated to meeting the needs of Oklahoma
support one another in this battle...Mark founded the Walk
www.biak.us/michael-quinlan-brain-tumorfoundation n Monmouth and Ocean County Brain Tumor Support Group (United States)
families, caregivers and patients affected by primary brain or
for the Mind in 2003. The Walk is a way to unite those
supporting brain tumour research.
central nervous system tumors.
The Monmouth and Ocean County Brain Tumor
www.okbtf.org n Pediatric Brain Tumor Foundation of the United States
n mASS Kickers (United States)
Support Group is a US-based (New Jersey) brain tumor
The Pediatric Brain Tumor Foundation® (PBTF) is a 501(c)(3)
mAss Kickers Foundation (MKF) is a 501(c)(3) non-profit
nonprofit charitable organization that seeks to: find the cause
organization, which provides support and motivation to
of and cure for childhood brain tumors by supporting medical
individuals and their families as well as to raise funds to support brain tumor research in hopes to find a cure.
all newly-diagnosed patients, family, and friends affected
research; increase public awareness about the severity and prevalence of childhood brain tumors; aid in the early
website, fund-raising, and select events throughout the year.
n Musella Foundation - Virtual Trials.com - Clinical Trials and Noteworthy Treatments for Brain Tumors
Founded by brain tumor patient Dr Eric Galvez.
(United States and Web-based)
a national database on all primary brain tumors; provide
Regarded as one of the most comprehensive brain tumor
educational and emotional support for children and families
websites in the English-speaking language.
affected by this life-threatening disease.
n Matthew Larson Pediatric Brain Tumor Research Foundation
n Naseem’s Manx Brain Tumour Charity
www.pbtfus.org/index.htm n Pediatric Low Grade Astrocytoma Foundation
The Matthew Larson Pediatric Brain Tumor Research
Foundation seeks to raise the awareness and funds
Our aim is to support Isle of Man residents who are
The US-based Pediatric Low Grade Astrocytoma Association
needed to overcome pediatric brain tumors and to help the
suffering with a brain tumour by way of giving them
(PLGA) seeks to raise awareness, funding, and find a cure
children and families affected by them.
financial support and providing the latest information about
for this disease.
n Matthew’s Miles ((United States)
www.fightplga.org n Philippines Brain Tumour Alliance
by tumors or cancer. MKF serves this mission through its
Our mission is to raise brain tumor awareness in
detection and treatment of childhood brain tumors; support
We are committed to improving the lives of those affected
the general public and to raise money for pediatric
n National Brain Tumor Society (United States)
by brain tumors. Educating and empowering the patients
brain tumor research in hope of finding a cure for this
The National Brain Tumor Society is a nonprofit
and their families to improve the quality of their lives.
organization inspiring hope and providing leadership
within the brain tumor community. We exist to find a
cure and improve the quality of life for those affected by
n Meagan’s Walk: Creating a Circle of Hope
brain tumors. We fund strategic research, deliver support
n PPR Foundation (United Kingdom)
services, and promote collaboration.
We are committed to raise £1 million by 2015 to fund Brain
Meagan’s Walk, held annually on Mother’s Day, raises
Tumour Research. We will support various research projects
awareness about paediatric brain tumours and funds for
n Neuro-Oncology Information Network - NOgIN
around SickKids Hospital, Toronto, Canada.
NOgIN is a not for profit organisation whose mission is
n ROC On! (United States)
dedicated to reducing the physical and emotional impact
ROC On! (Run Over Cancer) was developed by Laurie
n Meningioma Mommas (United States)
associated with the diagnosis and ongoing
Dangler, M.D., brain cancer patient, to organize people to
Meningioma Mommas is a 24/7 online support group for
treatment of patients with a brain tumour. It aims to
run or walk all or half of the Columbus Marathon and raise
all those affected by meningioma brain tumors. The non-
improve outcomes for patient’s and their families living in
funds for research at The Ohio State University’s Arthur G.
profit organization is also committed to raising funds for
James Cancer Hospital.
meningioma specific research.
aimed at possible causes, cures, treatments or effects thereof.
research. Participants conclude the walk with a circle (“hug”)
n Samantha Dickson Brain Tumour Trust
n Tali’s Fund (Canada)
n United Brain Tumour Support
Tali’s Fund was set up in remembrance of four-year-old
Samantha Dickson Brain Tumour Trust (SDBTT) is the largest
Tal Doron, who died from a brain tumor. The Fund raises
Located on the Gold Coast, Australia.
adult and childhood brain tumour charity dedicated to
money for research projects at SickKids Hospital (Canada)
research and support in the UK.
and helps provide emergency funds for families with a child
Contact Pete McLaughlin: (Australia) 0422 784 885
www.braintumourtrust.co.uk n San Diego Brain Tumor Foundation (United States)
n Voices Against Brain Cancer
The San Diego Brain Tumor Foundation (SDBTF) was created
www.taldoron.com n Tanner Seebaum Foundation (United States)
to support the brain tumor community in San Diego (USA).
The Tanner Seebaum Foundation is a US-based
scientific research, increasing awareness within the medical
(Centennial, Colorado) non-profit organisation that strives
community and supporting patients, their families and
to fund medical research that will lead to a cure for brain
caregivers afflicted with this devastating disease.
n Sontag Foundation (United States)
tumors and places special emphasis on the treatment of
The Sontag Foundation, a private American foundation,
ependymoma and glial tumors of the brain and spine.
seeks to improve the lives of brain tumor patients by
(United States) Our mission is to find a cure for brain cancer by advancing
n Walk for Kate and Blankets for Brains
funding brain tumor medical research. Their grants support the work of outstanding early career scientists in the US
n Team Billy (United States)
and Canada. They also assist a brain tumor patient support
This organisation’s mission is to foster public support
Walk for Kate was founded in June 2010 as a nonprofit
group in Jacksonville, Florida.
of a vision of a world where brain tumors no longer exist as
501(c)3 corporation dedicated to finding a cure for
www.sontagfoundation.org/display. aspx?page=home n Sophie’s Wish (United Kingdom)
a deadly and debilitating illness. They also fund
brain tumors. Our goals include advancing community
awareness and raising funds through walking (and
running for those more adventurous among us) to further
Sophie’s Wish aims to raise awareness of brain tumours,
n Teenage Cancer Trust (United Kingdom)
their symptoms, diagnosis and treatment. We also
The Teenage Cancer Trust (TCT) is a charity dedicated to
campaign for and raise much needed funds for further
improving the lives of teenagers and young adults with
http://www.walkforkate.org/about.html n We Can Pediatric Brain Tumor Network
research into brain tumours in order to help improve this
cancer. They fund and build specialist units for young
desperate survival rate.
people in National Health Service hospitals. TCT also
We Can is a (Los Angeles, USA) parent-initiated pediatric
provides specialist Nurse Consultants who provide clinical
brain tumor network that offers information and emotional
care, develop research, deliver professional education and
support to families with children who have brain tumors.
n Southeastern Brain Tumor Foundation
ensure that standards remain as high as possible.
n Werkgroep Hersentumoren vzw
Atlanta, Georgia and seeks “to improve the quality of life for
www.teenagecancertrust.org n The Cure Starts Now Foundation
brain tumor patients and their families”.
Werkgroep Hersentumoren vzw - Study Group Brain
The Cure Starts Now Foundation fights for the cure for
Tumours Belgium - is a multiprofessional group consisting
children with brainstem glioma and cancer survivors
of patients and their relatives, physicians, caregivers in the
n Spinal Cord Tumour Forum (Web-based)
broadest sense of the word, neurologists, neurosurgeons,
This is a website for people in the UK who have had, or
http://www.thecurestartsnow.org/ n Thorne Mason Trust (United Kingdom)
nurses, psychologists, social workers, etc.
The Southeastern Brain Tumor Foundation is based in
brain tumor research.
www.spinalcordtumour.org.uk n STOPhersentumoren.nl (The Netherlands)
The Thorne Mason Trust provides support to suit the
www.wg-hersentumoren.be/Welcome.php n Western North Carolina Brain Tumor Support
needs of individuals who have been affected by a brain
tumour or cancer in any way. These include services such
WNCBTS is a US-based (Asheville, North Carolina) adult
A Dutch foundation established to raise public awareness
as gardening, cooking, cleaning etc. We are also raising
support group for brain tumor survivors, their families,
and funding for urgently needed brain tumor research to
money to fund vital research into brain tumours. The
find the cause and cure for this disease.
Thorne Mason Trust’s long term aim is to open its own
complementary brain tumour and cancer care centre based
whose lives have been affected by, benign spinal cord tumours.
n Worcestershire Brain Tumour Support Group
n Students Supporting Brain Tumor Research SSBTR (United States)
Our mission is to provide education and leadership
n Tuberous Sclerosis Association (United Kingdom)
in the UK aims to offer information and support to anyone
development to our youth, furnish a platform for them
The Tuberous Sclerosis Association promotes awareness,
affected in any way by a brain tumour.
to play a principal role in effecting positive changes in
research and the best management of tuberous sclerosis
their communities, promote awareness of how common
complex and supports all affected individuals and families.
brain tumors are as the leading cause of cancer deaths
The Worcestershire Brain Tumour Support Group (WBTSG)
n Zimbabwe Brain Tumor Association The Zimbabwe Brain Tumor Association (ZBTA) seeks to
among their peers and act as outreach to support affected individuals and their families.
n Tug McGraw Foundation (United States)
campaign for widespread knowledge on brain tumors, to
The mission of the Tug McGraw Foundation is to provide
improve the quality of life for brain tumor patients and their
resources and hands-on support, foster understanding,
caregivers in Zimbabwe, through access to better care,
n Svenska Hjärntumörföreningen (Sweden)
promote awareness, and stimulate research and scientific
improved facilities and treatment. They seek to instil hope
The Swedish Braintumour Foundation is a brain tumour
collaboration to improve quality of life for people with brain-
and strength through shared knowledge and support. The
support and information group established in 2006.
related trauma and tumors.
ZBTA’s motto is: “achieving through hope and strength”
Other organisations and sources of information* (*The IBTA cannot be held responsible for the content of other organisations’ websites included in the list below.) n African Organisation for Research and Training in Cancer www.aortic.org
n Children’s Brain Tumour Research Centre
n Aimee’s Army www.aimeesarmy.com
n Chinese University of Hong Kong Brain Tumour Centre www.surgery.cuhk.edu.hk/btc
n Association pour la Recherche sur les Tumeurs Cerebrales
n Collaborative Ependymoma Research Network
(CERN - United States)
n Associazione Italiana per i Tumori Cerebrali - AITC
n Cure for Life Foundation
n Grupo Espanol de Investigacion en Neurooncologia
(GENO - Spain)
www.geino.es/ (United States)
n Health EU portal - Cancer http://ec.europa.eu/health-eu/health_problems/ cancer/index_en.htm n Italian Association of Neuro Oncology (AINO) www.neuro-oncologia.eu n Jerry Kline
n JimmyTeens TV
www.tumoricerebrali.it n David M Bailey website
n Brain Research Trust
www.brt.org.uk n Brain Tumor Center at Memorial Sloan-Kettering (United States)
n ECCO (European CanCer Organisation) Patient Advisory Committee www.ecco-org.eu/Patient-section/page.aspx/12
n Newro Foundation www.newrofoundation.com.au/ n OrphaNet www.orpha.net
www.mskcc.org/mskcc/html/70038.cfm n Brain Tumor Epidemiology Consortium (BTEC) www.epi.grants.cancer.gov/btec n British Journal of Neuroscience Nursing
n EudraCT - European clinical trials database https://eudract.ema.europa.eu/
n Preston Robert Tisch Brain Tumor Centre (United States)
www.cancer.duke.edu/btc n European Association of NeuroOncology (EANO) www.eano.eu
n Rare Cancers Europe (RCE) www.rarecancerseurope.org/
www.bjnn.co.uk n Canadian Brain Tumour Consortium www.cbtc.ca
n European Association of Neurosurgical Societies (EANS) www.eans.org
n RARECARE (Pan-European rare cancer initiative) www.rarecare.eu n Society for Neuro-Oncology
n Cancer World Magazine www.cancerworld.org/ n Cellular & Molecular Neuro-oncology Research Group, University of Portsmouth (United Kingdom)
www.port.ac.uk/research/ibbs/ cellularandmolecularmedicine/ cellularandmolecularneurooncology n Center for Analysis of Rare Tumors
n European Cancer Patient Coalition (ECPC) www.ecpc-online.org n European Organisation for Rare Diseases (Eurordis) www.eurordis.org
n Centre for Minimally Invasive Neurosurgery (Australia)
www.soc-neuro-onc.org n US National Institutes of Health clinical trials database www.clinicaltrials.gov n Wagner-Jauregg Hospital
n European School of Oncology (ESO) www.eso.net/esonet/home.aspx?id_sito=1&id_ stato=1
(Cartwheel - Australia)
n European Society of Medical Oncology (ESMO) www.esmo.org n Gliogene Study www.gliogene.org/
www.wagner-jauregg.at n World Federation of Neuroscience Nurses (WFNN) www.wfnn.nu n Zentrum für NeuroOnkologie, Universität Regensburg (Germany)
INTERNATIONAL BRAIN TUMOUR ALLIANCE
Please join us in 2012!
In 2011, there were 149 brain tumour relevant organisations which supported the IBTAâ&#x20AC;&#x2122;s two main projects of the:
INTERNATIONAL and the BRAIN TUMOUR AWARENESS WEEK These two projects are being repeated for the sixth year in a row in 2012. We are currently compiling our list of 2012 supporting organisations. Contact firstname.lastname@example.org or email@example.com to become a supporter. The IBTA requires no financial commitment from your organisation to be a supporter.
YOUR SUPPORT OF THESE TWO POPULAR GLOBAL EVENTS WILL FURTHER HELP BRAIN TUMOUR PATIENTS TO DEAL WITH THE CHALLENGES THEY FACE.
Attack: anyone Causes: unknown Screening: unrealistic Prevention: impossible Treatment: improving
Urgently needed: more research and support International Brain Tumour Awareness Week: 28 October - 3 November 2012
INTERNATIONAL BRAIN TUMOUR ALLIANCE