VISION, MARCH 2014
IFP MP asks Zuma to legalise marijuana Inkatha Freedom Party Member of Parliament Mario Oriani–Ambrosini recent appeal to President Jacob Zuma to legalise medicinal marijuana as an alternative treatment for cancer patients has created a lot of interest. In 2013, he had been diagnosed with stage four lung cancer and he described his cancer diagnosis as unexpected with a short life expectancy. Oriani–Ambrosini told the president he was supposed to have died already, but he is positive the marijuana remedy has saved his life. He added that it is a crime against humanity to deny the treatment to millions of cancer patients. “People are dying because of bad policies and bad laws, which we can change. There are available cancer treatments, which are not made available from a legal view point”says Oriani-Ambrosini. Carte Blanche has also contributed to the debate, featuring it on their Sunday magazine programme and responses on their Facebook page showed over 94% of people responded in favour of medical marijuana. However Head of Healthcare and Life Sciences at Werksmans Attorneys, Neil Kirby, feels that the decriminalisation of medical marijuana is a complicated legal challenge and is unlikely to succeed any time soon. (Werksmans Attorneys are believed to act for a number of pharmaceutical companies.)
SHAVATHON The 2014 Shavathon was held throughout South Africa at the beginning of March and once again people queued to have their hair shaved or sprayed in aid of cancer.
Ride4Skin Cancer at the Argus Congratulations to all the Ride4skincancer cyclists on a great ride in the Argus. Despite the windy conditions it was a great day out and so good to see you and your tireless supporters promoting the Cancer Buddies organisation. Well done to the whole team. Until next year . . . The mission of “Ride 4 Skin Cancer” is to raise awareness of the dangers of skin cancer and to encourage people to raise funds to contribute to the work that Cancer Buddies undertakes in supporting people living with cancer.
VISION, MARCH 2014
Doctors; not quite tea party
Canned foods tops
In my home, we have two conversations; politics and medicine. The most vociferous discussions are around their product, Healthcare. We know doctors on the right and left, Democrat and Republican, boisterous blues, rebellious reds and garrulous grays. Respecting opinions and debate, we love ‘em all. However, no matter on what side of the aisle they stand, which lever they pull, they share one trait. All physicians are deeply conservative. This is part of the firm foundation of medicine and is simultaneously an obstruction to healthcare innovation.
A new study published in the American Journal of Lifestyle Medicine addresses the common call to action from public health experts to improve access to and consumption of fruits and vegetables. Findings from the Michigan State University (MSU) study show that canned foods deliver on nutrition, affordability and safety helping people increase their fruit and vegetable intake, regardless of geography or income level. The study, "Nutrition and Cost Comparisons of Select Canned, Frozen and Fresh Fruits and Vegetables" analyzed more than 40 scientific journal studies and nutrition data, comparing canned fruits and vegetables to fresh and frozen based on nutrition and cost. The researchers found that: canned fruits and vegetables are on par nutritionally with fresh and frozen, and in some cases even better. In fact, canned tomatoes have more lycopene, which is associated with reducing cancer risk, and more B vitamins than fresh tomatoes.
How you ever wondered why health is the last industry to embrace any fad or innovation? I know doctor’s offices that are still without fax machines. Can you imagine a bank that will not let you see your account records? If you can buy groceries, spray paint or a burger at lunchtime, why is your doctor closed? Your physician orders the same antibiotic he prescribed 20 years ago. Why can’t you email your doctor? Health is the last major sector of our economy to go electronic. Can you imagine a used car dealership, bookstore or airline without computers?
death, pain and suffering, hope and loss; so suck it in, “man” up, learn your lessons and move on. And, never forget.
Doctors are conservatively fixed, a few years behind, feet in concrete. While they may be quick to prescribe “me-too” drugs, true health innovation proceeds like molasses, as doctors remain isolated in their silos, heads down, blinders on, one methodical step at a time, while the world changes at the speed of the electron. Why do these highly intelligent people resist change?
Thus, no physician, once he/she gets something “right,” will easily change. It becomes hardwired in to every action. How you greet each patient, how you take a history, how you record your decisions, how you organise treatment and even how you give bad news. Deviate from these lessons and you know, deep down, the patient will suffer. It does not matter if there “might” be a “better” way. Doctors are highly conservative in their work style, they re-educate with great resistance and rapid dramatic innovation is nearly impossible.
The answer lies in how doctors are trained. Physicians do not learn their craft from books or lectures. If that was so, anyone could read the Internet today and perform open-heart surgery tomorrow. Docs learn from long years of “practicing” medicine, one patient at a time. Personal, individual, painful, trial-and-error education. Do it “right” and the patient feels better. Do it “wrong” and the patient feels worse. Make a brilliant decision and the patient is saved. Make the same brilliant decision, but with a minor twist, and the patient dies. No doctor anywhere, ever, forgets the decisions that failed to save a life or, just maybe, resulted in death.
It is vital to understand this concept when trying to bring significant change to medicine. Why are docs fighting electronic medical records (EMR)? Because, they fear it will interfere with how they interact with patients and how they gather information; this will lead to mistakes. Why do docs “hate” Obamacare? Complex, almost indecipherable change. Why write antibiotic prescriptions for viral sore throats? They remember the strep throat they missed that went bad. Transfusions for borderline anaemia? They are haunted by the young father with the heart attack they might have saved. Truly, working together in teams and groups like Affordable Care Organisations? That would require changing how you make decisions, taking time away from patients to communicate and, above all else, the possibility of showing weakness.
Added to this brutal real-life learning is the zeitgeist of medical culture. Whatever happens, it is your fault. Each doctor is trained to evaluate, decide, and act, by himself; whatever the result, the doctor must live with the outcome. Do not whine. Never open up, show weakness, nor look for comfort and support. We’re talking life and
James C. Salwitz, MD
Innovators must deal with this conservative core value. Simply presenting a good or exciting idea may work if you are selling i-Pads, a new soda or a cool car. In that broad market of ideas, the motivations are excitement, exploration, competition and a first adopter philosophy. Doctors are the prototypic last adopters. They will always wait for someone else to go first. They demand a duplication of data. They demand respect not because they are hubristic, but because of the decisions they must make. They require time to evolve. While they are curious, intelligent and capable, as they stand on the wall protecting their patients, they are scared.
Dr. Salwitz is a Clinical Professor at Robert Wood Johnson Medical School. He lectures frequently in the community on topics related to Hospice and Palliative Care and has received numerous honours and awards, including the Physicians Leadership Award in Palliative Care. His blog, Sunrise Rounds, can be found at http://sunriserounds.com
The practice of medicine is about fear and guilt. Fear for the mistakes you will make. Guilt for the ones you already have. This must be remembered as we build the healthcare of tomorrow. It is a value to be respected, because it protects patients. It is a value of concern, because it resists needed change. Nonetheless, protective conservatism will be there, as long as there are those who give their lives to heal the suffering of their fellow man.
VISION, MARCH 2014
Balls n Hooters cancer awareness Creating an informed youth and cancer-free South Africa detection and treatment of disease among teenage boys and girls. The campaign will be held from the 7 April to 27 June at various schools across the Cape Peninsula, West Coast and Boland as well as Durban and Port Elizabeth and parts of Gauteng.
Following a successful 2013 campaign, members and volunteers of Can-Sir and its partner Cancer Buddies, will once again create the opportunity of addressing students during the period of the “10c for Cancer Balls n Hooters Cancer Education Campaign, in order to deliver talks and demonstrations on a very important topic affecting young boys and girls from adolescence and especially with the introduction of the cervical cancer vaccination.
In order to make this a fun event, we ask that all communities, students, parents, teachers and staff, collect ten cent (10c) coins and hand them to us on the day of our visit, There is no cost to the school; all we ask is for the collection of the coins. The cancer education campaign will also fall in line with the “Life Orientation” syllabus, sub category “Health Promotion” which should not need explaining. Over the past year, the response to our awareness campaign has been overwhelming, with a call to expand the programme nationally across South Africa. Can-Sir, together with our partners Cancer Buddies, intends to maintain this momentum by encouraging the participation of the general public, as was done so successfully in 2013.
Sanctioned and endorsed by the Western Cape Department of Health, the purpose of the education run, is to heighten the awareness of preventable health problems such as testicular cancer, male and female breast cancer and cervical cancer and to encourage early
We are proud to announce our banking partner, FNB (First National Bank) a division of First Rand Ltd., have opened their doors to institutions and the public to donate or deposit their 10c For Cancer coins at any of their branches nationwide by following normal banking processes. Our banking details are: Account Name: Can-Sir 096-066-NPO Account Number: 623 7260 7592 Branch: 250-655 Reference = 10c For Cancer
LiveSTRONG gives scientists something to think about
Cancer Buddies Training Course
Scientists are finding that silicone wristbands, such as your LIVESTRONG wristband, are effective in detecting pollutants in the environment in which you live. Acting as a “sponge,” the wristband collected up to 76 different chemicals in a study, including pesticides and flame retardants. Scientists are now thinking of new uses for the wristbands, such as giving them to those in disadvantaged communities to monitor their exposure to pollutants, especially in pregnant women.
to be held on 5 & 6 April at Hazeldene Hall, (opp. Netcare Park Lane Hospital) Juncion Road, Parktown
LAST CHANCE TO BOOK Further details from: Bernice 083 444 5182 or email@example.com 3
VISION, MARCH 2014
Cancer and Laughter
New Midrand Cancer Support Group
For so many years, if you were told you had cancer, you equated that with death. And the path to that death was usually paved with treatments that caused pain, trauma, and cast a pall on your daily emotional and physical life. Cancer meant sadness – for you and the people who cared about you. But for an increasing number of people today, the story is different. Medical science is starting to “get it right.” While still many cancers cannot yet be cured, people can live longer and live well. And yes, they can enjoy good times and laugh. To be sure, there are cancer diagnoses that remain daunting, treatments that are disfiguring and people beaten down and lost to cancer much too soon. But clearly, more and more cancers are becoming “chronic” and life goes on and with that the chance to – yes — laugh about it. This is brought home to me as I host each successive Patient Power forum. Many people are used to such events where doctors get up at a podium, show complicated scientific slides, and give formal presentations designed to give you hope. You sit there and take a lot of notes and work hard to understand. Sometimes you don’t. But that’s not the in-person events produced by the Patient Power team!
CanSurvive Cancer Support Groups and Cancer Buddies are starting a new monthly Group at the Netcare Waterfall City Hospital in Midrand. The first meeting will be held on 3 May and any cancer patients, caregivers or family are welcome to attend. There is no need to book and no charge will be made. For more details call: Chris Olivier 083 640 4949 or firstname.lastname@example.org Bernice Lass 083 444 5182 or email@example.com
I describe our patient forums (or what I like to call “town meetings” but my staff hates that fearing the term has been polluted by politicians) as much like interactive television “talk shows” with me as a male, white, bald-headed Oprah (I hope she will forgive me for the description). And like Oprah we try hard to lead compelling discussions with the entire audience as a community. Yes, there are frank stories of fear, there are tears, but we also sing songs (recently “You are my sunshine” led by a myeloma patient and “Happy Birthday” for a leukemia patient), and we laugh – a lot. In the safe space of a room of 300 people with a blood cancer we can joke about the “joy” of bone marrow biopsies or the fun of bringing homemade cakes to celebrate positive checkups with the clinic staff. The Patient Power philosophy as we gather is upbeat and, sometimes even “fun.” It’s the fun of meeting people who know what it’s like, of celebrating successes over a disease that once took the wind out of
our sails, but now less so. It’s the fun of spending an afternoon with experts who are caring, human, and rather than in a rush, are there to connect with you and help you and your partner or family members understand and feel more confident and positive. People leave our events with a smile and a plan for how they will manage their condition better and live life more fully. It’s very gratifying. In 2014 we plan to produce many more events like these around the US. We are gathering funding to do this in CLL, myeloproliferative neoplasms (MPNs), and myeloma as a start. My hope is we can expand to other conditions very soon. And our mission each time is to break the traditional mold of seminars and fairly boring processions of “expert” presentations and deliver instead a few hours of community, conversation, understanding, and inspiration and punctuate it with laughter. I am not talking about humor as therapy, although years ago writer Norman Cousins showed it could be that. I am talking about laughter that comes with people with same health concern coming together, knowing we are more than our illness, and, happily celebrating that there are signs we are doing better.
Wings of Hope
If you have a funny story about your cancer journey, Share it. Sure, cancer is a real downer. But our spirit says it doesn’t have to be that way hour after hour, and when we get together it definitely isn’t. The writer of this article is AndrewSchorr who is also the author of the new book The Web-Savvy Patient: An Insider's Guide to Navigating the Internet When Facing Medical Crisis. He is a respected medical journalist and 15-year leukemia survivor. He founded healthtalk.com and patientpower.info and has hosted almost 3,000 online talk shows for patients with chronic conditions and cancers. Many of America's leading medical centres support his work.You can find his blog at http://blog.patientpower.info/
With communication comes understanding and clarity; with understanding, fear diminishes; in the absence of fear, hope emerges; and in the presence of hope, anything is possible. – Ellen Stovall (1995) Self-Advocacy and Cancer Survivorship. Illness, Crises and Loss.
Wings of Hope supporters consulted with cancer patients on cancer prevention through self examination and related topics at Oliviedale Hospital.
VISION, MARCH 2014
PinkDrive has been on the road again Cape Argus 2014 For the fourth year running, PinkDrive turned Hout Bay Pink during the annual Cape Argus, Pick n Pay, Momentum Cycle Challenge Tour 2014. This year there were 174 riders in pink supporting PinkDrive. Their stand on the 1st floor at the Lifecycle Expo was a hive of excitement with hundreds of visitors. They educated visitors and performed 152 breast examinations and did 159 PSA tests, which assist with indicating possible prostate cancer. Funds raised will be used to keep the two PinkDrive Mobile Breast Check Units on the road. The highlight was being graced with the presenceof the Deputy Minister of Women, Children and People at both their stand during the Expo and the PowerZone area in Houtbay. They received a tremendous display of interest from riders for the event in 2015.
Midmar Mile With a fabulous 8-milers marquee and shop set up, PinkDrive had a great presence at the aQuelle’ Midmar Mile, the world’s largest competitive open water swim! At the marquee the 8-milers enjoyed a scrumptious meal, a soothing shoulder massage and
a well-deserved full body sports massage by trained physiologists. Thank you to all the sponsors that helped to make this possible!
World Cancer Day! In response to myths surrounding cancer, some of South Africa’s leading cancer NGOs joined forces with interested stakeholders and launched a national Cancer Anti Stigma Campaign on World Cancer Day (04 February) at the Chris Hani Baragwanath Academic Hospital. This with the aim of educating, increasing awareness, exposing myths and encouraging early detection of cancer amongst South Africans. The Campaign known as the Voice of Cancer Anti Stigma Project, includes People Living with Cancer, Campaigning for Cancer, PinkDrive, Can-Sir, CHOC Childhood Cancer Foundation, More Balls than Most and Hospice Palliative Care Association and is supported by various Government and corporate stakeholders, in a collaborative resolve to stamp out the myths and stigmas surrounding the disease.
Dragon Boats ahoy! Looking for a fun way to spend your Sunday? How about joining the Dragon Boat team, Wings of Fire, at Florida lake? They are looking for men and women - survivors /caregivers of any cancer - to man the boats! And when it rains, they practice Belly Dancing and Zumba to keep themselves fit! Dragon boating has become one of the fastest-growing water sports in the world, uses a drummer, a steersperson and 18 to 20 paddlers to propel the long, narrow boat. Because of the number of paddlers and the size of the boat, keeping in sync with teammates is essential, but very difficult. Since the inception of Abreast In A Boat, breast cancer survivor teams have appeared across the United States, with many more in Canada and countries worldwide. Other cancer survivors have also taken up paddles and formed teams as a support group, form of exercise and awareness tool. Their next event is in June, so if you would like to start training with them now, contact Ina (firstname.lastname@example.org) and she will tell you more about this great social sport.
LIVESTRONG’s latest innovation: CANCER HACKS Cancer Hacks are tips, tricks, ideas, facts, photos and inspiration—small pieces of digestible content that help make life with cancer a little bit easier every day. They are ”cures" for the little things during one’s cancer journey that often go overlooked, but can make all the difference—like how to tap into your networks for the help you need or what to bring with you to your first chemo treatment. Visit www.cancerhacks.org and see how other patients are coping with their problems - or maybe you have a Cancer Hack you can share!
VISION, MARCH 2014
New method to detect prostate cancer Each year prostate tissue samples are taken from over a million men around the world – in most cases using 12 large biopsy needles – to check whether they have prostate cancer. This medical procedure, which was recently described by an American urology professor as ‘barbaric’1, shows that 70% of the subjects do not have cancer. The examination is unnecessarily painful and dangerous for these patents, and it is also costly to carry out.
Great rewards! “With your help, the Help Fight Childhood Cancer research team in Japan has discovered seven drug candidates that show great promise as new treatments for neuroblastoma, one of the most common and dangerous forms of childhood cancer. In lab tests, these drug candidates were very effective at destroying neuroblastoma tumours without any apparent side effects.”
So does this mean the high PSA level is a false alarm? Not always: the biopsies may have been taken at just the wrong places. Cancer is later found in 30% of the patients with negative results (no cancer). Among the positive results, doctors do not know the exact sizes of the tumour. In many cases, operations show that the tumours are so small that surgery was unnecessary. As well as that, the examination leads to inflammations in up to 5% of patients. Plus the fact that each examination costs around USD 2500 to carry out.
What have I been doing to deserve this? I’ve been allowing the World Community Grid to use the excess computing power of my PC to help find cures, alleviate hunger, combat climate change and more. I’ve got silver, gold, ruby and even emerald digital badges – with no effort on my part!
Research team leader Massimo Mischi at TU/e has developed a method to investigate whether and where men have prostate cancer using existing ultrasound scanners, together with the Academic Medical Center Amsterdam. These devices create images of organs in the body using sound waves, but these systems are usually unable to show the difference between healthy and tumour tissue. To make this visible, Mischi used the fact that tumour tissue produces large numbers of small blood vessels to allow it to grow, with a characteristic pattern . Patients are given a single injection of a contrast medium containing tiny bubbles, which are shown by the ultrasound scanner right down to the smallest blood vessels. Using advanced imageanalysis techniques that can recognise the characteristic blood vessel pattern in tumours, the computer then generates an image showing where the tumour is. The examination only takes one minute, and the results are available no more than a few minutes later.
World Community Grid's mission is to create the world's largest public computing grid to tackle projects that benefit humanity. World Community Grid is making technology available only to public and not-for-profit organisations to use in humanitarian research that might otherwise not be completed due to the high cost of the computer infrastructure required in the absence of a public grid. IBM Corporation has donated the hardware, software, technical services and expertise to build the infrastructure for World Community Grid and provides free hosting, maintenance and support. Making a difference has never been easier! Grid technology is simple and safe to use. To start, you register, then download and install a small programme or "agent" onto your computer.
The researchers were able to compare the ‘tumour images’ from 24 patients at three hospitals in the Netherlands with the actual prostates after removal by operation. The images were found to give a good indication of the locations and sizes of the tumours. A symposium at which the results obtained with this method weree discussed was held recently.
When idle, your device will request data on a specific project from World Community Grid's server. It will then perform computations on this data, send the results back to the server, and ask the server for a new piece of work. Each computation that your device performs provides scientists with critical information that accelerates the pace of research! Why don’t you register now!!
support for all cancers! Join us at the CanSurvive Cancer Support Group - have a cup of tea/coffee, a chat with us and listen to an interesting talk.
Next Group meeting 12 April 09:00 at Hazeldene Hall, Junction Rd, Parktown Caregivers Support meeting: 29th March at Hazeldene Hall Enquiries: Chris 083 640 4949 or email@example.com Bernice 083 444 5182 or firstname.lastname@example.org The Group is run in association with the Johannesburg Branch of Cancer Buddies and is hosted by Netcare. The Group is open to any survivor, patient or caregiver. No charge is made.
VISION, MARCH 2014
Dates to diarise
March 2014 18
Prostate Mens Support Action Group, Medi Clinic Constantiaberg at 18h00 “The current state of prostate imaging” - Dr Martin Payne.
Steel Magnolias ancer Support Group for Women. 20 Peak Drive, Pinelands, Cape. 19h00
Rondebosch Medical Centre Support Group. GVI Practice 4th floor. 18:00 - 19:30Contact Linda Greeff 082 551 3310
Cancer Buddies & CanSurvive Buddies Training Course at Hazeldene Hall, Parktown. Booking necessary
WORLD HEALTH DAY
Reach for Recovery, 19 St.Johns Road, Johannesburg10 Cape Gate Oncology Centre, “Cancer and My Sexuality”
CanSurvive Cancer Support Group, Hazeldene Hall, Parktown 9:00
Bosom Buddies, Hazeldene Hall, Parktown
Rondebosch Medical Centre Support Group. GVI Practice 4th floor. 18:00 - 19:30Contact Linda Greeff 082 551 3310
St. John’s Catholic Church Awareness Group, North Riding, 10:30. Subject: Cervical cancer/pap smears CanSurvive Cancer Support Group, Hazeldene Hall, Parktown 9:00
Cape Gate Oncology Centre, “End of treatment – what now?”
Rondebosch Medical Centre Support Group. GVI Practice 4th floor. 18:00 - 19:30Contact Linda Greeff 082 551 3310
WORLD NO TOBACCO DAY
Cape Gate Oncology Centre, “Look Good, Feel Better”
Rondebosch Medical Centre Support Group. GVI Practice 4th floor. 18:00 - 19:30 Contact Linda Greeff 0825513310
People Living With Cancer, Cape Town: 076 775 6099, email@example.com, www.plwc.org.za GVI Oncology /People Living With Cancer, Rondebosch Medical Centre Support Group. Contact: Linda Greeff 0825513310 firstname.lastname@example.org GVI Cape Gate Support group: 10h00-12h00 in the Boardroom, Cape Gate Oncology Centre.| Contact: Caron Caron Majewski, 021 9443800 GVI Oncology Somerset West Group for advanced and metastatic cancers. Contact person: Nicolene Andrews 0218512255 Cancer.vive, Frieda Henning 082 335 49912, email@example.com Can-Sir, 021 761 6070, Ismail-Ian Fife, firstname.lastname@example.org Support Group: 076 775 6099. Bosom Buddies: 011 482 9492 or 0860 283 343, Netcare Rehab Hospital, Milpark. www.bosombuddies.org.za. Prostate Cancer Support Action Group, MediClinic Constantiaberg. Contact Alan Mitchell on 073 560 3067 or email@example.com
May 2014 Wings of Hope Breast Cancer Support Group at German School, Parktown. 09:30
People Living With Cancer, Johannesburg, CanSurvive Cancer Support Group : 083 640 4949, firstname.lastname@example.org
CanSurvive Cancer Support Group, Hazeldene Hall, Parktown 9:00
29-30 Relay for Life. CANSA Central Gauteng Region at St.Stithian’s College, Lyme Park, Sandton 17h30 for 18h00 29 CanSurvive Caregivers meeting, Hazeldene Hall, Parktown 09:30. Please book. 31
Prostate Cancer Foundation, Helpline 084 283 3982 www.prostate-ca.co.za Steel Magnolias Cancer Support Group for Women, Pinelands, Cape 021 531 3963 or 072 040 7563 Wings of Hope Breast Cancer Support Group 011 432 8891, email@example.com St. John’s Catholic Church Awareness Group, enquiries to Pam 011 678 3677 / 083 307 0315 CHOC: Childhood Cancer Foundation SA; Head Office: 086 111 3500; firstname.lastname@example.org; www.choc.org.za CANSA National Office: Toll-free 0800 226622
CANSA Johannesburg Central: 011 648 0990, 19 St John Road, Houghton, www.cansa.org.za
NATIONAL CANCER SURVIVORS’ DAY
CanSurvive Cancer Support Group, Hazeldene Hall, Parktown 9:00
Reach for Recovery, 19 St.Johns Road, Johannesburg
Cape Gate Oncology Centre, “Managing chemo sideeffects”
Wings of Hope Breast Cancer Support Group at German School, Parktown. 09:30
Breast Best Friend Zimbabwe, e-mail bbfzim@gmailcom
St. John’s Catholic Church Awareness Group, North Riding, 10:30. Subject: Lung cancer Rondebosch Medical Centre Support Group. GVI Practice 4th floor. 18:00 - 19:30Contact Linda Greeff 082 551 3310
Cancer Centre - Harare: 60 Livingstone Avenue, Harare Tel: 707673 / 705522 / 707444 Fax: 732676 E-mail: email@example.com www.cancerhre.co.zw
Reach for Recovery (R4R) : Johannesburg Group, 011 487 2895. Reach for Recovery (R4R) Pretoria Group: 082 212 9933 Reach for recovery, Cape Peninsula, 021 689 5347 or 0833061941 Reach for Recovery: Durban, Marika Wade, 072 248 0008, firstname.lastname@example.org Reach for Recovery: Harare, Zimbabwe contact 707659. PinkDrive: email@example.com, www.pinkdrive.co.za
VISION, MARCH 2014
The App Store
News in brief
Chemo Brain Doc Notes FREE Created by a cancer patient, Chemo Brain Doc Notes FREE allows you to remember the important questions for your next doctor’s visit. Before your appointment, record your critical issues quickly and easily in text or voice memo format. At your visit, refer back to your questions to make sure your urgent issues are addressed. Chemo Brain Doc Notes FREE also allows you to record your visit to help remember what was discussed: relevant medical issues, complex medical terminology or next steps. Jot down reminders about your prescriptions, side effects, symptoms, or test results or create your own topic folders. Chemo Brain Doc Notes FREE helps you overcome chemo brain and become an educated and empowered patient.
Bladder cancer symptoms Of the top 10 cancers in the UK, bladder cancer is only one where survival rates have been shown to be getting worse. Shockingly, bladder cancer isn't a rare cancer that only affects a few people every year. In fact, bladder cancer is the seventh most common cancer (the fourth most common for men) with over 10,000 people diagnosed with it every year in the UK where over 5,000 people lose their lives to this little discussed disease every year. Bladder cancer is generally easily diagnosed by urologists, but unfortunately most people are not aware of the key symptoms, so they don't go and see their GP as quickly as they should. In addition, some of the main symptoms of bladder cancer are also linked with other medical problems, resulting in GPs delaying the referral of patients on to urology specialists. This is a particular problem for women, who experience a greater amount of delayed diagnosis than men. There is also a common misconception that bladder cancer only affects older men which means that GPs often believe that the symptoms are not symptomatic of a cancer and instead diagnose problems such as recurring urinary tract infections when they occur in women, younger men and children.
Chemo Brain Doc Notes features: • • • • • •
Create or organise folders by topic Add text notes Add voice memos with playback Add due dates Add note priorities Record and playback your doctor’s visit (with your doctor’s permission) • See all questions in a single folder • Email recorded memos to family members with $1.99 in-app purchase (also removes ads)
Very few members of the public will know that smoking is believed to be the main cause of about half of the cases of bladder cancer, or that others cases can stem from exposure to industrial chemicals and dyes. However, for many bladder cancer patients, the medical profession still cannot find a reason why they have succumbed to this disease.
Also available is My Doc Notes for use with your GP etc. Focus on Lymphoma The Lymphoma Research Foundation produced the Focus on Lymphoma app which provides a breadth of capabilities conveniently at your fingertips: from content tailored to your subtype and disease stage in the Learnsection, a full suite of tools to help manage your health in the Track section, to a variety of LRF resources and networks in the Connect section, LRF hopes that this unique resource will assist you throughout your treatment and survivorship. Tutorials throughout the app will guide your experience with each new feature and tool.
The most common symptom of bladder cancer is blood in your urine. Sometimes this is clearly visible, but in many cases it can only be picked up when tested by your doctor. There are no accepted screening tests for bladder cancer, so it is really important that awareness of all the causes and symptoms are better known. If caught early, the five years survival rates for bladder cancer can be as high as 80%, but if treatment is delayed this can drop to as low as 15% or less for advanced cases.
Pain Diary – Catch my Pain Medical experts recommend that patients keep a pain diary in order to be able to treat effectively. Using CatchMyPain you can create detailed colour pain drawings showing the location and intensity of your pain; visualise the course of your pain with a graph; export the pain diary to share with your doctor; describe the quality of the pain (hot, cold, electrifying etc.).
New paradigm in cancer immunotherapy Tumour metastasis is the primary cause of mortality in cancer patients and remains the major challenge for cancer therapy. Researchers from the Institute of Molecular Biotechnology (IMBA) of the Austrian Academy of Sciences (OeAW) in Vienna have now revealed a novel mechanism by which immune cells can spontaneously reject metastatic tumours. Their findings provide a proof-ofprinciple that it might be possible to develop a "pill" that awakens the immune system to kill cancer metastases.
gression of metastases in melanoma and breast cancer was significantly inhibited. The researchers also identified a molecular path by which Cbl-b blocks NK cell activity towards metastatic tumours. In collaboration with researchers at the Lead Discovery Centre of the Max Planck Society in Germany, they developed an inhibitor molecule directed against the receptors that are regulated by Cbl-b in NK cells, the so called TAM-receptors. "Cbl-b/TAM constitutes an inhibitory pathway for NK cell activation. Blocking TAM receptors via different routes of administration, including giving it as an oral 'pill', markedly reduced metastatic spreading in our model systems", says Magdalena Paolino, first author of the study. Last author Josef Penninger explains: "Metastases are the main reason why cancer patients die. Our results
The immune system is not only responsible for controlling infections, but also for recognising and destroying cancer cells. Cancer immunotherapy has therefore become one of the breakthroughs in tumour treatment. Austrian scientists, in collaboration with researches in Australia and Germany, have now shown that a molecule called Cbl-b acts as a molecular brake for Natural Killer (NK) cells to reject cancer. Deletion or targeted inactivation of Cbl-b efficiently enhanced the anti-tumour function of NK cells. As a result the pro-
VISION, MARCH 2014 hold promise that it might be possible to develop Cbl-b or TAM inhibitors that empowers the innate immune system to kill cancer metastases. This would be indeed opening the Holy Grail for cancer therapy. However, more research needs to be conducted to advance our findings and to test for possible side-effects."
The Independent Lifestyle The formation of The Independent Lifestyle Company is a personal reaction to Ken Walker’s father’s search for a bookstand and a lumbar support pillow, but, more broadly, it is Ken’s personal venture to bring you the best products to support an active, healthy and independent lifestyle. They have been trading since 2011 through their paper based catalogue and are now operating a website – www.theilc.co.za.
Along the way, the researchers also solved a more than 50 year old puzzle in cancer treatment. It has been known for decades that warfarin, the most widely used anticoagulant worldwide, reduces tumour metastasis in model systems. However, the underlying mechanisms remained unclear. "Our findings provide a molecular explanation for this old paradoxon, revealing that warfarin has anti-metastatic effects through inhibiting the novel identified Cbl-b/TAM receptor pathway in NK cells. This also offers the possibility to re-assess the use of vitamin K antagonists such as warfarin in cancer therapy", concludes Magdalena Paolino.
They offer an amazing number of items which would make a real difference for patients and people with any disability. They vary from bath seats, over-bed table, motion sensor night light, key turner, a car swivel seat to a garden grabber. Make a note of their website – you never know what you might need.
Every day, multiple cells in our body become transformed and develop the potential to become cancer cells. However, such tumour cells display unusual antigens that are either inappropriate for the cell type or its environment, and can thus be recognised by the body's immune system. Modern medicine therefore aims to stimulate the patient's immune system to attack the tumour cells.
with capping molecules that hold the drug in like a cork in a bottle. The nanovalves contain special molecules that respond to the energy from two-photon light exposure, which opens the pores and releases the anticancer drugs. Another feature of the nanoparticles is that they are fluorescent and thus can be tracked in the body with molecular imaging techniques. This allows the researchers to track the progress of the nanoparticle into the cancer cell to ensure that it is in its target before light activation.
Tissue-penetrating light releases chemotherapy inside cancer cells
For more information on the Jonsson Cancer Center, visit their website at http://www.cancer.ucla.edu.
Researchers from the cancer nanotechnology and signal transduction and therapeutics programs of UCLA’s Jonsson Comprehensive Cancer Center (JCCC) have developed an innovative technique using light to carry chemotherapy safely to cancer cells. Drs. Jeffrey Zink and Fuyu Tamanoi, published their findings in the journal Small in February.
Developing a wearable bra which spots early signs of breast cancer
A light-activated drug delivery system is particularly promising, because it can accomplish spatial and temporal control of drug release. Finding ways to deliver and release anticancer drugs in a controlled manner that only hits the tumour can greatly reduce the amount of side effects from treatment, and also greatly increase the cancer-killing efficacy of the drugs. The difficulty of treating cancer often derives from the challenges of getting anticancer chemotherapy drugs to tumour cells without damaging healthy tissue in the process. Many cancer patients experience treatment side effects that are the result of drug exposure to healthy tissues.
A new approach to breast cancer screening would put thermodynamic sensors into a woman’s bra to assess her risk.
In this new technique, nanoparticles are equipped with specially designed nanovalves that can control release of anticancer drugs from thousands of pores, or tiny tubes, which hold molecules of chemotherapy drugs within them. The ends of the pores are blocked
The proposed device component of the system is a small, 16-sensor array that’s placed under a woman’s bra to collect 12 hours worth of breast cell data. The sensors pick up on thermodynamic metabolic data, which is then transmitted to the cloud, where FWS’s algorithms scour it for irregular patterns in cell behavior that indicate disturbance in circadian rhythm. (Over the last decade or so, evidence has been building that disruption in circadian rhythm is associated with increased breast cancer risk in women).
A health tech company in the US, is planning the launch of a clinical validation trial of a wearable sensor that it says could spot changes in breast cell metabolism that suggest a tumour is forming. First Warning Systems proposes that its device would be cheaper and more sensitive than a mammogram, and could overcome some of the challenges of current breast screening techniques, like high rates of false positives and late detection.
Tollfree service for cancer patients
Feedback from the Circadian Biometric Recorder would be delivered on a computer or mobile device. It is designed for use by a physician or outpatient clinic as well as eventually for home use. The core technology has been tested on more than 500 patients.
PLWC Cancer Buddies now has a tollfree number - it is
0800 033 337
All cancer patients now have access to free cancer support and can ask any questions about cancer and treatment of cancer; the emotional issues related to the cancer journey; questions about side effects of treatment; assistance with accessing resources like wigs, prosthesis, home nursing and hospice. Problems relating to access to treatment or services delivery issues can also be reported .
Detecting real-time effectiveness of cancer therapies Oncologists and cancer patients could improve the results of drug therapies by making real-time decisions about treatment options
VISION, MARCH 2014 using an innovation developed by a researcher in Purdue University's College of Pharmacy. Laurie L. Parker, assistant professor of medicinal chemistry and molecular pharmacology, is developing a method to detect if cancerinhibiting drugs are entirely blocking the activity of enzymes, called kinases, in tumour cells. Several kinases are linked to cancer development. If a drug therapy only partially blocks kinase activity, the cells that survive could become a stronger tumour and develop a resistance to the drug. "Currently, the only way doctors and patients learn if kinase activity is being blocked is by watching and waiting. Sometimes it takes months or years before signs of resistance are visible as the tumour regrows," Parker said. "By the time it is detected, the relapsed tumour can't be treated with that drug anymore." Parker and her graduate students created a method that works like a search engine by taking a lot of information about what a particular kinase looks for in a substrate, or the protein it acts upon. The technology narrows the information to a shortlist of traits, including being acted upon by only one kinase and providing the signal that the test seeks. The Purdue Office of Technology Commercialisation has filed patents on Parker's innovation. Purdue University has also patented technologies including new cancer treatments. For more information visit http://www.otc-prf.org/otc.
Mindful eating Mindful eating is an approach that involves choosing to eat food that both satisfies and nourishes. It also means learning to eat when you are actually hungry and stopping when you are full. The Centre for Mindful Eating lays out the Principles of Mindful Eating as follows: According to Harvard Health Publications, “A small yet growing body of research suggests that a slower, more thoughtful way of eating could help with weight problems and maybe steer some people away from processed food and unhealthy choices.” Mindful eating is: o Allowing yourself to become aware of the positive and nurturing opportunities that are available through food selection and preparation by respecting your own inner wisdom. o Using all your senses in choosing to eat food that is both satisfying to you and nourishing to your body. o Acknowledging responses to food (likes, dislikes or neutral) without judgment. o Becoming aware of physical hunger and satiety cues to guide your decisions to begin and end eating. http://tinyurl.com/oq6zz3t
New scan finds cancer's sleeper cells
Cancer cells after being given a special sugar which highlights their energy stores when seen under a microsope. nique has immediate potential in the clinic to assess how well drugs are working for patients, and to warn of potential relapses post-treatment". “The ability of cancer cells to escape treatment by entering these dormant states has stymied progress for the treatment of numerous different cancers. This technique has immediate potential in the clinic to assess how well drugs are working for patients, and to warn of potential relapses post-treatment.” Cancer cells can enter a sleeping state when they stop growing and instead store energy for future use – much more so than most normal healthy cells. But by using a radioactive molecule which mimics what our body uses to create energy, the researchers could measure the build up of these energy stores, known as glycogen, using positron emission tomography (PET scan). Previous methods to examine energy stores in cancer cells all required invasive techniques involving biopsies which could only sample a small section of the tumour.
Simple paper urine test may detect cancer, blood clots A cancer-detecting paper strip that can sample urine for signs of tumours in the body could one day make it simpler and more affordable to detect some cancers at an early stage. "Something I think that's really shocking is the prevalence of cancer and cardiovascular disease in both the developed world and the developing world," says Andrew Warren, a graduate student at the Massachusetts Institute of Technology who led the team of researchers that developed the test. "Diagnostics are really a great way to help a lot of people as quickly as possible." Unlike communicable infections like HIV and tuberculosis, signals from tumour proteins are difficult to detect. To get around that problem, the researchers created nano-scale biomarkers that can be injected into the bloodstream.
Researchers have developed a new imaging technique that lights up cancer’s sleeper cells, warning patients and doctors of a potential relapse according to a study published in Cancer Research.
Each marker is designed to interact with specific proteins that are produced by cancer cells. When the two meet, the proteins snip off tiny fragments of the marker. Those fragments eventually find their way into the urine.
Cancer Research UK scientists at Imperial College London have developed a non-invasive scan which can detect dormant cancer cells in mice. Since most cancer treatments rely on targeting fast growing cells, these dormant cells can be resistant to therapy and are often responsible for cancers coming back.
The test works like a pregnancy test – a person urinates on a paper strip coated with antibodies that can detect the marker fragments. If the fragments are present, the paper displays a line indicating the presence of cancer tissue in the body. Altogether, the process takes about an hour.
Professor Eric Aboagye, senior author on the study, said: "This tech-
The research showed that the strip was able to detect colon cancer,
VISION, MARCH 2014 as well as blood clots – which can be a sign of cardiovascular problems – in a group of mice. Warren says they can develop more biomarkers to target other types of cancer. But even with cheap diagnostic tools, many people will still lack access to adequate treatment. "There's something very unfair and troubling if we're able to tell people that they might have serious diseases and there's nothing that can be done about that," Nilsson says. "If we're pushing out diagnostics, then the ability to treat should also be at the same places."
Bracelet helps support the Cancer Buddies toll-free line
All cancer patients and their families have free access to free cancer support through Cancer Buddies, a project of PLWC.
Testing indigenous plants as cancer killers
Cancer Buddies, who take the hands of the cancer patient, are all trained to take calls and deal with the needs of the patient and their journey. The hope and support offered by this service is incredible and assists the patients to feel more in control of their journey with cancer.
Native Australian plants are being screened for potential cancerkilling properties by Flinders University researcher Dr Bradley Simpson.
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Working with three Indigenous communities in the Adelaide Hills, Flinders Ranges and Cape York in Far North Queensland, Dr Simpson is testing eight different flora species to look for possible medically useful compounds to treat cancer. He is currently experimenting on several cancer types including acute leukaemia and skin, lung, breast and colon cancers. Now in its eighth month, Dr Simpson said the study has detected early changes in the appearance and shape of cancer cells when combined with semi-crude plant extracts, meaning “the plants are essentially killing the cancer cells”. “We’ve seen some promising effects on changes to the morphology of the cancer cells but we still need to test the plants on healthy, normally functioning cells to see if they have selective killing properties,” Dr Simpsonnsaid. “I wouldn’t say we can cure cancer with one chemical treatment alone, it takes a broader approach, but if we find some promising results from these plant studies it means we might be able to use them to complement existing treatments.”
Sun powers complex cancer test for remote regions
Visit the website www.cancerbuddies.org.za for further information and to buy bracelets online. The beautiful handmade emblem of the wristband was designed and painted by the famous artist Pierre Volschenk. therapies. This is partly due to the difficulty of making an accurate diagnosis with current technologies, which results in delayed treatment and advanced disease, which is difficult to treat. Tests can be performed in less than a half-hour, potentially enabling rapid diagnostics where long travel distances to clinics make follow-up meetings with patients difficult,” said Ethel Cesarman, M.D., professor of pathology and laboratory medicine at Weill Cornell Medical College in New York. “DNA tests are extensively used in medical diagnostics since they are sensitive and specific. Some places in the developing world have limited infrastructure and unreliable electricity, and these kinds of tests usually hog energy,” said David Erickson, Cornell professor of mechanical and aerospace engineering. A smartphone application, working in conjunction with the PCR device, provides results of the diagnostic tests. http://tinyurl.com/lw5qy6y
From the sun, a solution: Cornell University and Weill Cornell Medical College researchers have remodeled an energy-intensive medical test – designed to detect a deadly skin cancer related to HIV infections – to create a quick diagnostic assay perfect for remote regions of the world, according to Scientific Reports, an online publication of Nature. By harnessing the sun’s power and employing a smartphone application, medical technicians may now handily administer reliable assays for Kaposi’s sarcoma, which has produced significant morbidity and mortality rates among adults and children in sub-Saharan Africa.
If you are over 50 we would like to suggest that you visit the You’ve Earned It website at www.youve-earned-it.co.za. Much is covered in this website – Health and Wellness, Travel, Financial Planning etc. One really nice feature on the Financial Planning page is that YEI members are able to ask finance-related questions via the website on anything from retirement planning, to queries on tax services, investments, wills and estate planning. If travel is your thing, the Travel page showcases some lovely trips. Like freebies? Competitions and ticket give-aways are featured regularly.
“Mortality in sub-Saharan Africa following a Kaposi’s sarcoma diagnosis is unacceptably high, even after introduction of antiretroviral
DISCLAIMER: This newsletter is for information purposes only and is not intended to replace the advice of a medical professional. Items contained in Vision may have been obtained from various news sources and been edited for use here. Where possible a point of contact is provided. Readers should conduct their own research into any person, company, product or service. Please consult your doctor for personal medical advice before taking any action that may impact on your health. The information and opinions expressed in this publication are not recommendations and the views expressed are not necessarily those of People Living With Cancer, Cancer Buddies, CanSurvive or those of the Editor.
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