Did you know that the Bone Cancer Research Trust offer all newly diagnosed primary bone cancer and bone tumour patients* non means-tested grants to help with the costs of a cancer diagnosis?
We offer all patients a one off payment of £125, and an additional payment of £170 if the patient is receiving proton beam therapy or has been recruited onto a clinical trial in the UK.
To find out more information and details of how to apply visit: bcrt.org.uk/grants
CONTENTS
FEATURES
04 Welcome to this edition of United magazine, the FREE magazine from the Bone Cancer Research Trust.
05 08 10 12
OTHER CONTENTS
06. Meet Dr Lucia Cottone our first Early Career Fellow. 07. Proton Beam Therapy: Is this the future of cancer treatment? 11. Meet William C.H. Cross, our guest writer, as he discusses his research and how our funding gave him a real eureka moment. 14. Adam Lever celebrates ten years since the end of his treatment for osteosarcoma by running the iconic London Marathon. 15. Dr Martin McCabe discusses how the international clinical trial ‘rEECur’ is testing new drugs to improve the treatment of Ewing sarcoma. 18. See how £1 million of new funding will take a pioneering clinical trial to the next level.
NEWS IN BRIEF
partner charities on the second Teenage and Young Adult Cancer Awareness Month. We asked you, our wonderful community, to help us raise awareness of primary bone cancer in young people so that together we can make a tangible difference for this unique age group. Thanks to your help, we achieved a potential reach of over 148 million worldwide. That’s millions of people who hopefully now know the signs and symptoms and how they affect teenagers and young adults!
NEW EWING SARCOMA RESOURCE LAUNCHED
We are thrilled to announce the reGuide to Ewing sarcoma which is here to support and empower patients, families, and caregivers through the overwhelm that a diagnosis may bring. From body image and prognosis to follow-up care and life after treatment, this one-stop resource has it all and has been written for patients aged 16-24 in clear, accessible language.
Find out more about this ‘gold standard’ information here:
NEW
BONE CANCER DRUG IDENTIFIED
We are proud to share that a trustee of the Bone Cancer Research Trust has identified a new treatment that works against the main types of bone cancer in exciting research news. This promising discovery, by Dr Darrell Green at the University of East Anglia, could result in increased survival rates with treatment that is less toxic than current chemotherapy.
Find out more about this discovery here:
WELCOME...
This issue is packed full of research interviews, inspirational fundraisers, and uplifting stories as we introduce you to former patient Evelyn and her mum, Lisa. You can find out about the special moments they shared during treatment over on pages 12 and 13.
We are proud to present our ten-year research strategy for 2022-2032 with an introduction from Katie Horsfall. It outlines how we will be working with sarcoma specialists around the world to improve both survival rates and quality of life for our patients.
Speaking of research, we have lots of exciting updates to share with you. Turn to page 15 for an exclusive interview with Dr Martin McCabe and find out about the new drug we are introducing to the rEECur clinical trial for relapsed Ewing sarcoma patients. To find out why we are providing £1million of new funding to expand ICONIC, the UK’s first age-inclusive clinical trial for osteosarcoma patients, head over to page 18. You can also discover more about targeted treatment for chondrosarcoma from our guest writer, Dr William CH Cross, on page 11.
Since the last issue of United, our supporters have been out in full force across the capital as our largest London Marathon team ever challenged themselves to complete the iconic London Marathon.
The 26.2-mile route would be an incredible achievement for any runner, so turn to page 14 to find out how one osteosarcoma survivor
completed the event with a difference to celebrate being ten years cancerfree.
Supporting patients is at the heart of everything we do, and the costof-living crisis that is sweeping across the country is placing even more worries on people living with bone cancer. To help, our Financial Assistance Grants are available for every newly diagnosed bone cancer and tumour patient in the UK. Visit page 2 for more information and to find out how to apply.
We love to hear from our readers! If you have any feedback or would like to share ideas or topics us to cover in the next issue, please let us know by emailing info@bcrt.org.uk
Katie Horsfall Senior Communications and Campaigns Officer
Scan the code to download your copy
MEET OUR FIRST EARLY CAREER FELLOW DR LUCIA COTTONE
As part of our commitment to nurturing the next generation of bone cancer researchers, we have awarded £500,000 of transformational funding to Dr Lucia Cottone at University College London (UCL), who will use our brand-new Early Career Fellowship Grant to investigate osteosarcoma cell resistance to chemotherapy.
We spoke to the talented and emerging Dr Cottone to find out more about her path into research. Below she shares how motherhood motivates her work in this field and how she plans to use vital research funding.
PLEASE CAN YOU INTRODUCE YOURSELF AND TELL US ABOUT YOUR RESEARCH?
I am a senior research fellow at University College London. After studying for a PhD in cancer immunology in my native Italy, for the past seven years I have been working with Professor Adrienne Flanagan at the UCL Cancer Institute.
My research is focused on finding out why osteosarcoma cells become resistant to chemotherapy. Research into the more common cancers has shown that some cancer cells ‘go to sleep’, which reduces the rate at which they multiply but means they avoid the effects of treatment.
I hope to develop ways of preventing the cells from becoming dormant, so they regain sensitivity to chemotherapy.
WHAT ARE YOUR HOPES FOR FUTURE PATIENT OUTCOMES?
The information gathered from this research will help predict which tumours are likely to be resistant to chemotherapy, by identifying specific biomarkers on tissue samples obtained at the time of diagnosis.
Drug screening will then lead to the identification of molecules that improve the effectiveness of chemotherapy and I hope that, after being tested in clinical trials, they will be made available to patients.
Scan the code to read the full interview
WHAT DOES IT MEAN TO RECEIVE FUNDING FROM THE BONE CANCER RESEARCH TRUST?
With this fellowship, I have been given the opportunity to lead a new and exciting research project to help those impacted by primary bone cancer, which includes many young people. As a mother of three, it reminds me how important my daily research progress is.
IS THERE A MESSAGE YOU WOULD LIKE TO SEND TO OUR SUPPORTERS?
Because of your support, we can advance our knowledge of primary bone cancer and translate it directly to patient benefit. This work simply would not be possible without you.
MEET THE BUSINESSES GIVING BACK...
Did you know that many of our events are only made possible thanks to the support of corporate sponsors. Laura from the digital marketing agency Stockley and Turner tells us why sponsorship is her way of making a difference.
HOW DID YOU BECOME INVOLVED WITH US?
In 2021, my nephew Miles was diagnosed with osteosarcoma. The feeling of helplessness that I experienced was beyond disheartening at times, despite his resolve and positivity.
Our family found out about the charity and the incredible work that was taking place, from research and awareness to support groups and events.
I took home a Bone Cancer Ball brochure and my partner, Martin, said we should become a sponsor through our marketing agency. Having seen the
WHY DID YOU BECOME A CORPORATE SPONSOR?
After attending the Bone Cancer Conference, we were blown away by how amazing the event was, and even more so that corporate sponsorship enabled it to happen.
difference this charity makes to families and patients; it was an easy decision for us. The ball was incredible, I don’t think we’ve ever met so many like-minded people united by the same cause. The emotion throughout the room was on another level, and we can’t wait to sponsor the ball again this year.
WHAT MESSAGE WOULD YOU GIVE TO OTHER BUSINESSES?
We have seen first-hand the difference that this charity and its sponsors make, as well as the devastating reality of bone cancer. Miles passed away on New Year’s Eve in 2022 aged just 15, and this is a cause that will always remain close to our hearts.
Sponsoring the Bone Cancer Research Trust is something you and your business can be proud of. It is an amazing charity, and one we will support forever.
You can read more about our events on page 17, or to enquire about sponsorship please email rachel.wallace@bcrt.org.uk
MEET OUR GUEST WRITER WILLIAM C. H. CROSS
LECTURER IN THE SCHOOL OF LIFE SCIENCES AT THE UNIVERSITY OF WESTMINSTER
The story that I am about to present to you could be considered cliché. It starts with an assumed scientific truth and is followed by a surprise result. A eureka moment. The longterm implications of this research for chondrosarcoma are yet to be determined, but as with all in the research world, it acts as motivation to discover the full implications for patients.
From previous research, we know some important details about chondrosarcoma. As with all cancers, the normal cells that create the disease develop a mutation to their DNA. In chondrosarcoma, the mutation effects a specific gene called IDH1, which normally controls cell behaviour. When broken by a mutation, the cell behaves inappropriately, and the eventual result is a cancer. For this reason, mutations in genes like IDH1 are known as “drivers” of cancer.
Knowing that the majority of chondrosarcomas have mutations in the IDH1 gene, several scientists have begun developing drugs that might be able to control or cure a patient’s disease. These are called IDH1-inhibitors, and Ivosidenib is perhaps the best known. In other cancer types, it has been shown
that controlling these drivers of disease is an effective strategy, but in chondrosarcomas, there appears to be something different going on. In the results of early Ivosidenib trials, some patients responded to the drug, while others did not. While we don’t expect new drugs to perform perfectly, on paper, IDH1 should be very effective since it is found in the majority of chondrosarcomas.
In 2019, our laboratory was lucky to be awarded funding from the Bone Cancer Research Trust to study chondrosarcoma. We originally sought to better understand the specific mutations that are found in this disease, but in doing so we have revealed something very surprising about IDH1 mutations. In some patients, the cancer plays a trick on us by removing the IDH1 driver from
its genome. Of course, if the target of the drug is no longer there, the drug will not work. We believe this happens because cancer cells are very good at adapting. They seem to be able to forgo IDH1 as they transform into advanced disease.
I should stress that this finding does not suggest that IDH1-inhibitors do not work. Instead, it suggests that we need to be careful how we administer the drugs in patients with advanced disease. Long term, we hope that other researchers will go onto validate our findings, and perhaps experimentally prove that IDH1 removal does indeed prevent Ivosidenib from working. Longer term, it may be possible to use this information as part of a test that is offered to patients before undergoing treatment with IDH1-inhibitors.
EVELYN’S STORY
In 2021 Evelyn was diagnosed with Ewing sarcoma when she was just 10 years old. Evelyn and her mum, Lisa, kindly share their story and how even in the most of difficult times you can still have precious moments.
Around March Evelyn had mentioned feeling some numbness and tingling in the bottom of her foot which we didn’t pay much attention to, I couldn’t visibly see anything there and we didn’t notice any changes in her leg. Then one day our dog, who was a puppy at the time, jumped in her lap and landed on her calf in a certain way and her calf suddenly became very swollen. It seemed to happen out of nowhere, and that was what triggered us to go to the GP.
The whole time we thought we were treating an injury, but the injury didn’t really match what had happened. A dog jumping on your lap should not cause that level of damage, and so it raised some questions for the medical practitioners. The GP didn’t know what it was, and thought that it could be concerning and sent us to A&E. We had scans in A&E, but nothing showed up.
After the swelling on her leg became visible, we put some ice on it and elevated it for probably four or five days before going back to the GP. At the end of the week, Evelyn had an ultrasound, and the ultrasound showed something that really didn’t match that kind of injury, so it took about two weeks before we knew that there was something more seriously wrong. The following week she had a biopsy, which confirmed Ewing sarcoma.
Evelyn was treated at Alder Hey Children’s Hospital in Liverpool where she started 14 cycles of chemotherapy. She was an inpatient every two weeks for either five days, or two days depending on the infusion. Around nine cycles in, she had radiotherapy on her leg, and at the end of her chemotherapy she then had surgery to remove the tumour.
The surgery was unsuccessful, so soon after she had an amputation and following the amputation, she finally had lung radiotherapy, because at diagnosis they had found metastases in her lung.
Evelyn shared: “During chemotherapy, I felt really sick and felt like I couldn’t leave the house and I couldn’t join in with my friends and what they were doing. When I went in for surgery I was worried at the time because I didn’t know if they were removing the tumour or giving me an amputation.”
When we got Evelyn’s diagnosis, obviously our world changed. We did not know what to look forward to, what our day-to-day would be like, and we felt like our life as we knew it was over. What I wished I had known at the time, and what my advice to others facing this would be, is that we would still have so many joyful moments together. I feel like this is what has kept me going, kept us all going.
It’s what helped our family moving from that devastation. Nothing can take away those feelings, to understanding that we still have a chance to make the most of every single day. We don’t have control over the treatments, and we don’t have control over how you’re going to respond and how you’re going to feel with those treatments, but we can do the best for each other.
Ironically, I think some of our best memories together were in the hospital by ourselves. We didn’t have any interaction really with anybody else for a week, and those are precious moments, even though we certainly would never have chosen to be there.
I know from Evelyn’s perspective she wanted people to just have a bit more understanding of what she’s going through and what those challenges are, and I think I felt similarly. It isn’t ever really over, and I think people around us, and people that love us, they’re so eager to see us back to normal and they want to get back to feeling comfortable around us, and not having to face that worry and that fear that I felt. I think people need to understand that our lives have been changed in a lot of ways and that we’re not going to go back to how we were and to who we were.
Even though this is a rare cancer, early detection is so important, so I think having awareness amongst the public and medical community is really important. When we got our diagnosis there was a lot of information thrown at us at once, and we hadn’t even heard of bone cancer before, but we were given information and pamphlets which allowed us to come back to this in our own time.
We’ve been supported by the Support & Information Team at the Bone Cancer Research Trust. They have supported both Evelyn and her sister with Virtual Storytime and sending books for them which Evelyn had when she was in the hospital. I also attend Virtual Cuppa which has been great for me, even when we’ve had medical questions that we thought of and we don’t really have access to our consultants, they’ve helped us find those answers and put us in touch with people, so it’s been helpful for support and information.
BONE CANCER PATIENT GOES TO GREAT LENGTHS FOR THE LONDON MARATHON
To celebrate ten years since the end of his treatment for osteosarcoma, sports-mad Adam Lever took a different approach to the iconic London Marathon last April.
During his treatment, Adam received limb-salvage surgery to his left leg and had to learn how to walk again… but he didn’t let this ruin his dream of running one of the world’s most renowned sporting events.
After working to reintroduce sports into his life, Adam knew he had to rethink how to take on the 26.2-mile run. Last year, as part of his Ten for Ten challenge, he went for it… on crutches!
Reflecting on the challenge, Adam said:
“I want to inspire current and former bone cancer patients and promote the belief that anything is possible. Completing a marathon was something I would have loved to have done pre-cancer but, following my operation, I no longer thought it was possible. However, ten years on, I found myself reflecting on the process I went through to relearn how to walk. This gave me an idea… perhaps the thing that helped me to learn to walk again could also support me through this challenge. Two sticks of metal were pivotal in helping me to walk again and they were essential this time too. I simply would not be able to complete a marathon distance without them.”
In November 2011, shortly after starting university, Adam began to experience pain in his left knee, which he presumed was a pulled ligament from playing five-a-side football.
After several scans at his local hospital and a bone biopsy at the Royal Orthopaedic Hospital in Birmingham, Adam was diagnosed with osteosarcoma in his left leg.
His treatment began with two cycles of chemotherapy in January 2012, which was followed by surgery to replace the affected bone with a metal prosthesis. Following the operation, Adam underwent six cycles of post-operative treatment.
Ten years on, he raised an impressive £13,939 towards our work by completing the London Marathon!
Adam has since set up a Special Fund to continue his fundraising efforts in order to ensure that our support service is there for every patient and family member who needs us. Now and in the future. We are all so grateful for his continued support.
If you have been inspired by Adam’s story and would like to take on a marathon for #TeamBones, please visit:
bcrt.org.uk/Challenge
Q&A: INTERVIEW WITH DR MARTIN MCCABE
HONORARY CONSULTANT IN PAEDIATRIC AND YOUNG ADOLESCENT ONCOLOGY
CAN YOU INTRODUCE YOURSELF AND EXPLAIN MORE ABOUT THE NEW RESEARCH?
I am a clinical senior lecturer at the University of Manchester and a consultant paediatric oncologist at the Christie Hospital in Manchester. I also lead rEECur, which is a randomised controlled trial comparing chemotherapy combinations for relapsed Ewing sarcoma patients.
With the new funding, we will be introducing a brand-new treatment combination to the trial, using high dose ifosfamide together with lenvatinib.
We will also investigate which patients may benefit from this new regimen, moving us towards a more personalised approach to treatment.
WHY ARE YOU TESTING THIS NEW COMBINATION?
Lenvatinib is a non-chemotherapy drug that belongs to a class of drugs called multi-targeted tyrosine kinase inhibitors (mTKIs). Several mTKIs have shown promising results
rEECur is an international clinical trial looking to identify new drugs to improve the treatment of Ewing sarcoma. Thanks to funding from the Bone Cancer Research Trust, a targeted drug called lenvatinib is now being tested alongside chemotherapy. Dr McCabe, who oversees the trial in the UK, explains more.
when given to patients alone, some of which are almost the same as the best results with chemotherapy. We now want to see if we can improve survival rates by administering both drugs together.
WHO IS ELIGIBLE TO PARTICIPATE?
To be eligible for the rEECur trial, you have to be at least two years old and well enough to receive chemotherapy. If you have recently had chemotherapy, radiotherapy or other treatment, there needs to be a gap between that treatment and the rEECur treatment. rEECur is open in most specialist sarcoma centres in the UK, but if the trial is not open in your centre, your oncologist can refer you to a centre where you can participate.
IS THERE A MESSAGE YOU WOULD LIKE TO SEND TO OUR SUPPORTERS?
This groundbreaking trial would not have been possible without those who tirelessly raise funds. It is critical that we run these trials to ensure we are giving the best treatments available based on high quality evidence. The new funding will allow us to get the maximum amount of information possible from each patient recruited onto the trial.
Scan the code to find out more
A MOVE IN THE LIGHT DIRECTION
Mr Kenneth Rankin is one of the UK’s leading researchers and orthopaedic surgeons. He explains how he is connecting with fellow specialists around the world to introduce a revolutionary technique to the operating theatre, which could improve patient outcomes.
CAN YOU TELL US ABOUT YOUR NEW PROJECT?
Thanks to funding from the Bone Cancer Research Trust, we have established a research group to accelerate interactions between clinicians and scientists worldwide to harness new, exciting technologies to improve bone cancer surgery.
I will be collaborating with experts from the UK, the Netherlands, Japan, Canada, and the USA to speed up the introduction of Fluorescence Guided Surgery to the clinic.
WHAT DIFFERENCE DO YOU THINK THIS WILL MAKE FOR PATIENTS?
Fluorescence Guided Surgery involves injecting a patient with a special dye prior to their operation. The dye will stay in the tumour much longer than the surrounding healthy tissue, causing it to glow
(fluoresce) during the procedure. This will allow surgeons to use an infrared camera to operate more precisely, and successfully remove the entire tumour.
This technique may also help reduce the amount of healthy tissue removed, decreasing the impact of the surgery for patients
WILL IT BE MORE RELEVANT FOR SPECIFIC TYPES OF PRIMARY BONE CANCER?
Yes. So far, we have used a fluorescent dye called indocyanine green, which has been proven as safe in over a dozen patients with chondrosarcoma and has shown encouraging results. For osteosarcoma, we have noticed that in patients who have had chemotherapy before the operation, if the tumour has responded well to the chemotherapy, it does not fluoresce. But in cases where there has not been a good response,
the tumour has taken up the dye because it is still alive, and therefore will still glow.
IS THERE A MESSAGE YOU WOULD LIKE TO SEND TO OUR SUPPORTERS?
We are honoured to receive this funding. Not only will the findings from this consortium benefit future patients, but the results will eventually be helpful for people undergoing surgery for a range of other cancers.
We look forward to sharing the outputs of our research at the Bone Cancer Conferences in the years to come! Scan the code to find out more
FOUR MOTHERS, FOUR SONS AND THE FRIENDSHIP THAT CARRIED THEM THROUGH TREATMENT
Sam, Josh, Orean, and Miles were teenagers and young adults (TYAs) when their cancer journeys began during the coronavirus pandemic. The four young boys were all diagnosed with osteosarcoma and received treatment together every Tuesday at University College Hospital in London.
Parents Jenny, Fellecia, Katherine, Sarah and their boys spent many nights at the Cotton Rooms, the UK’s first purpose-built hotel for patients undergoing cancer treatment. Away from the smell of disinfectant and bleeping of heart monitors they enjoyed takeout pizzas, playing pool and watching football matches, reminding them that a life with cancer is still a life. Katherine, Josh’s mum, even recalls being told to move to a corner of the ward as they were laughing too loudly, an unexpected aspect to what she thought her son’s treatment would be like.
“It was so helpful being around other parents who you can openly talk about your feelings and what’s been going on. These are the people you can share the scanxiety, follow-up worries, and other issues with that will truly understand what you’re going through,” Katherine added.
New beginnings provided a sense of normality for the group as Fellecia, Orean’s mum, was pregnant while her son was going through treatment. The birth of her baby, Zaya, was a welcome distraction and healthy diversion for them. “It provided a glimpse back at ordinary life where you’re not talking about cancer. Watching him grow was a snap back to life as we once knew it,” Jenny shared.
Sarah and her son, Miles, were the newest members after Miles’ diagnosis in November 2021.
It brought Sarah and Miles comfort to see other young patients further along in their treatment journey, because as Sarah put it, “laughter, big smiles and conversation are good, especially when you are newbies at chemotherapy.”
Sam, Josh and Orean have finished treatment and are doing well in their recoveries. Despite his scans showing no evidence of disease (NED) and returning to school, Miles’ condition tragically worsened when his cancer returned and spread to other parts of his body. Miles sadly passed away on 31st December 2022.
Scan the code to read the full article
ADVANCING THE ICONIC CLINICAL TRIAL
Back in 2019 Dr Sandra Strauss launched ICONIC, the UK’s first age-inclusive national clinical trial for osteosarcoma patients. Here, she reflects on what the study has achieved so far, and explains how £1 million of new funding will take this pioneering project to the next level.
ICONIC
CAN YOU INTRODUCE YOURSELF AND GIVE US AN OVERVIEW OF ICONIC SO FAR?
My name is Sandra Strauss, and I am a consultant medical oncologist at University College London Hospital (UCLH) and chief investigator on the ICONIC trial.
Thanks to funding from the Bone Cancer Research Trust, ICONIC was launched in 2019 to bring together doctors, scientists, researchers, and representatives to recruit patients of all ages with newly diagnosed osteosarcoma. The trial was set up with the aim to learn from the patients we treat to make a difference to outcomes.
So far, we have recruited over 240 patients onto the study, collecting their clinical information and blood
and tumour samples to inform vital research. We have also collected information about their route to diagnosis, treatment, and impact on quality of life.
HOW WILL AD-ICONIC BUILD ON THE PROGRESS OF ICONIC?
Ad-ICONIC gives us the opportunity to continue the trial for two more years with longer follow-up. It will enable us to learn more from patients and begin research using the samples we have obtained.
It will also allow us to collect patients’ scans into a repository and collaborate with our European colleagues in order to develop an international clinical trial for osteosarcoma patients.
WHO IS ELIGIBLE TO PARTICIPATE?
All patients with osteosarcoma, so long as they are recruited within 4 months of diagnosis. Patients can get involved at one of 30 surgical or oncology centres across the UK.
WHAT COULD THIS TRIAL POTENTIALLY LEAD TO?
A better understanding of how the immune system affects osteosarcoma. We hope this will help us identify patients at high risk of recurrence, as well as those who are most likely to benefit from new treatments.
WHAT MESSAGE WOULD YOU LIKE TO SEND TO OUR SUPPORTERS?
Thank you so much for supporting this study which involves many professionals and patients. It is our hope that this research will improve outcomes and transform the way that we treat patients with osteosarcoma.
Scan the code to find out more
Left to right: Osteosarcoma patient and Bone Cancer Research Trust patient ambassador Pete Lloyd, Head of Research, Support and Information at the Bone Cancer Research Trust Dr Zoe Davison, ICONIC Principal Investigator Sandra Strauss, and former osteosarcoma patient and GP Dr Philip Green
LEAVE THE GIFT OF LIFE IN YOUR WILL
Help save lives for years to come by taking advantage of our Free Will Writing Service and remembering the Bone Cancer Research Trust in your Will.
Writing your Will can help give you peace of mind for the future – knowing that your loved ones will be provided for and your affairs will be taken care of.
That’s why we’ve partnered with three Will writing experts to help you write your Will at no cost to you. You can write your Will online in as little as 30 minutes, over the phone or meet with a solicitor.
With a gift in your Will, you can help change the lives of people affected by bone cancer for generations to come by funding vital work like that featured in this edition of United.
Visit: bcrt.org.uk/legacy
ABOUT UNITED
United is a free magazine for supporters of the Bone Cancer Research Trust. The Bone Cancer Research Trust is the leading charity dedicated to fighting primary bone cancer. The contents of United are the copyright of the publishers. Articles may be reprinted without charge provided that credit is given to United magazine. A copy of any reprinted article should be sent to the address below. Please let us know your thoughts and feedback about United by emailing info@bcrt.org.uk.
