QUARTERLY NEWSLETTER
SPRING 2024 - MARCH
INSIDE THIS ISSUE: INTRODUCING OUR NEW BLOG ANNOUNCEMENT OF OUR NEW COMMUNITY FUNDRAISING CO-ORDINATOR! A DAY OF FILMING IN LEAMINGTON SPA! NEW ‘FACES & VOICES’ STORY FROM A MEMBER OF OUR COMMUNITY ‘DAILY DIP FOR DAVE!’ UPDATES FROM OUR WONDERFUL FUNDRAISER, RUTH ...AND MUCH, MUCH MORE!
www.neuroendocrinecancer.org.uk
Registered charity number: 1092386
INTRODUCING OUR NEW BLOG
MARKETING UPDATE
VIRTUAL PATIENT HANDBOOK
WHAT’S COMING UP
NEWS
A DAY OF FILMING
WHERE IT ALL BEGAN
STORIES & EXPERIENCES
NETTER-2 STUDY RESULTS
CAR T-CELL THERAPY
ADVANCING NEUROENDOCRINE CANCER RESEARCH
INCA RESEARCH COMMITTEE
DAILY DIP FOR DAVE!
FUNDRAISE FOR NEUROENDOCRINE CANCER UK
CARCINOID HEART DISEASE
21st ANNUAL ENETS CONFERENCE
SPOTLIGHT ON NEUROENDOCRINE CANCER
Fundraising Support: hello@nc-uk.org Helpline: 0800 434 6476 General Enquiries: 01926 883 487 All other contact details and opening times can be found on our website by CLICKING HERE
www.neuroendocrinecancer.org.uk
WELCOME TO OUR 2024 SPRING NEWSLETTER
What a delight that Spring is finally here - longer days and more daylight is within reach! Here at Neuroendocrine Cancer UK it is the time when all our planning starts moving into active projects, and we have quite a few on the go. As an organisation we are constantly changing and evolving to try and meet the needs of all affected by neuroendocrine cancers. We have a strong focus this year on access to treatments and more
We have launched our most comprehensive patient information offering to date and ensuring that we have useful information for hospitals and clinics to utilise. We are driving our campaigns around HCP education and we have a new updated, expanded and improved training programme for nurses in progress. We are also taking some time to understand how people perceive us. We will be launching a survey shortly that we would be so grateful if you could complete. This survey will help us so much to stay on track, develop and grow to meet your requirements. conversations around the diversity of these cancers, more information about the different types of neuroendocrine cancers and reflecting this on an updated website that is being worked on now.
Every month we will be sharing our monthly roundups so you are fully informed, and we have some interesting podcasts to share this year so do look for those.
The support service have been working so hard to provide not only support but information in the form of the Webinatters. These are an amazing resource so please do sign up! We couldn’t do any of this without your support so thank you to each and everyone of you who has donated. We so appreciate it. I would also like to thank our Trustees for their time and expertise and we look forward to welcoming some new Trustees to the Board this year. We have a great group of Ambassadors that are such a vital part of our team, and this group has welcomed new members too - thank you all. I must also thank our advisory board and medical colleagues for the time they give to us. We know how precious their time is.
With that I hope this newsletter is interesting and helpful, and do know that we welcome feedback and ideas at any time.
See you soon, Cathy x
www.neuroendocrinecancer.org.uk
INTRODUCING OUR NEW BL We are really excited to be running a blog series. Each month we will explore a cancer world, some of the challenges that are faced and how they can be addr • Talking to people about your neuroendocrine cancer • Grief • Treatment options • How to feel empowered and work with your medical team We’d love to hear your feedback and any suggestions for future topics, so plea
HERE IS A TASTER OF THE FIRST TWO BLOG POSTS:
EMBRACING 2024: A YEAR OF RENEWAL, G With Catherine Bouvier, CEO Neuroendocrine Clare: Hi Cathy, Happy New Year to you. Here highlights? Cathy: Hi Clare, Happy New Year to you too! It out of opportunity. For me, the biggest highligh 200 plus ‘natter’ support group meetings our s
facilitators to the amazing fundraising activities that took place to strengthen an doubling of our research investment. Thanks to everyone who helped. This is a the future...
CLICK HERE TO READ BOTH BLOG POSTS IN FULL ON OUR WEBSITE
CANCER AWARENESS: WHY NEUROENDO February is always an important month for Neu gives us the perfect opportunity to talk about th World Cancer Day is a poignant reminder of th Cancer UK, this day holds profound significanc neuroendocrine cancer community. In this blog this global movement on individuals affected b
LOG
a different theme and take a look at the wider neuroendocrine ressed. Upcoming themes include:
ase do get in touch by visiting our website.
GROWTH, AND POSITIVITY e Cancer UK e’s hoping this year’s a good one! You had such a busy year last year, can you tell us some of the t was quite a big year last year; some of which was planned and other activities that were born ht was the sense of solidarity that I saw within the community. The care and support shown at the support service held with help from nd increase our research fund – we were able to fund four important research projects which is a an ongoing programme, and we want to really drive neuroendocrine cancer research now and in
OCRINE CANCER UK JOINS THE GLOBAL MOVEMENT uroendocrine Cancer UK. It is the month of World Cancer Day and Rare Disease Day which he unmet needs of this misunderstood cancer. he collective efforts needed to combat cancer worldwide. For organisations like Neuroendocrine ce, serving as a platform to raise awareness, advocate for change, and foster solidarity within the g, we delve into why Neuroendocrine Cancer UK celebrates World Cancer Day and the impact of by this rare form of cancer...
MARKETING UPDATE
Neuroendocrine Cancer UK
OVERVIEW OF OUR SERVIC One of our key aims for this year is to professionals and remind them of the It’s crucial for healthcare professionals inform those who may benefit from ou To enable this, we have created an ov Neuroendocrine Cancer UK can comp cancer. Please help us by sharing this overvie www.neuroendocrinecancer.org.uk You can find a copy of the overview by
Supporting Healthcare Professionals and Patients for Over 20 Years
CHARITY NUMBER: 1092386
HELPING YOU SUPPORT YOUR PATIENTS
Our Vision is a world in which people know how to recognise, diagnose, treat, care for, and ultimately cure people with neuroendocrine cancer. We are proud to work closely with UKINETS to raise awareness, educate, and drive a positive change in patient care.
Support Services
Patient Resources
Financial Assistance
Helpline: Nurse and peer-led. Counselling: One-to-one and group sessions Handbook: An interactive ‘one-stop shop’ toolkit for all things neuroendocrine cancer. ‘ Natter’ Support Groups: Local, regional & national Travel Welfare Grant: To support patient travel costs Wallet Cards: Hard copy materials including wallet cards to support patients. Click here to see all materials you can order.
Please provide your patients with a Neuroendocrine Cancer UK leaflet Order paper copies here or scan QR code.
HEALTHCARE PROFESSIONAL SUPPORT
Fund Research
We’d love to collaborate! Please get in touch with any ways we can support you! campaigns@nc-uk.org
1
Pump-priming Grant - £30,000 Practice-changing Grant - £10,000 Surgical Speciality Lead £30,000 Click here to learn more.
Medical Education
2
Neuroendocrine cancer overviews for each discipline. To support recognition and diagnosis NCUK Academy: Competency-based CPD
accredited nurse training. Click here to learn more.
www.neuroendocrinecancer.org.uk
Influencing Optimal Care
3
Improving care standards Neuroendocrine Cancer: An Ideal Patient-care
@neuroendocrinecanceruk @ncukcharity
Pathway launched in 2023 Click here to learn more.
NEUROENDOCRINE CANCER UK ARE THE CHARIT CARMARTHEN BAY FILM FESTIVAL The Carmarthen Bay Film Festival is the film-maker’s festival. It cham making and film-makers in Wales and from around the world. It is a film they received over 800 submissions from over 74 different countries. We are delighted to announce that we are the chosen charity partner fo Thank you to the Mayor of Llanelli, Nick Pearce, for proposing us for th Being the charity partner enables us to raise awareness of neuroendoc
CES FOR HEALTH CARE PROFESSIONALS re-introduce Neuroendocrine Cancer UK to healthcare vital services and support we offer. s to be aware of our organisation and the resources we offer so they can effectively ur support. verview for healthcare professionals highlighting the various ways in which plement them in their practice and support individuals affected by neuroendocrine
ew with your medical team and directing them to k y CLICKING HERE
TY PARTNER FOR THE
mpions the very best in independent film m festival that is really growing, last year,
or this year’s festival, taking place in May. his wonderful opportunity. crine cancer.
VIRTUAL PATIENT A PRACTICAL RESOURCE FOR ALL THOSE AFFECTED BY NEUROENDOCRINE CANCER You may have spotted the announcement in our December Newsletter introducing the new Virtual Patient Handbook and we are delighted to reveal that this invaluable, free resource has now received over 5000 views! As an ambitious small charity, we are incredibly proud of the scope and quality of our patient information and delighted that we can provide this kind of holistic guide for all those living with neuroendocrine cancer. We believe that it is important that the Handbook caters to a variety of learning styles, and as such, includes written content, videos, images and Q&As to form a comprehensive ‘toolkit’ for all those living with, and affected by, neuroendocrine cancer. Once again, we would like to thank our incredible supporter, Faye Cheetham, whose fundraising, in memory of her husband, Andrew, made the creation of the Handbook a reality. Faye and Andrew’s candidly honest love story is available as a podcast episode HERE or by visiting the Handbook HERE . To make the best use of the digital format, you can enjoy sharing specific pages from the Handbook with loved ones, redirect to external resources and watch embedded videos all with the click of a button. There is also a comprehensive ‘Additional Links & Resources’ section which lists nearly 100 websites, Apps and videos on topics such as sleep, diet, pre-treatment considerations, finance and travel. Just CLICK HERE to go straight to this section of the Handbook. The Handbook also features a handy ‘Abbreviations & Terminology’ section where you can gain clarification on commonly used medical jargon. And finally, we’d like to highlight the 7 Q&A videos that were created especially for the Virtual Handbook. Each video features a different medical expert answering a range of questions, some of which were asked by members of our community. We’d love to hear your thoughts and feedback on the Handbook, so please do get in touch by CLICKING HERE.
HANDBOOK
Throughout 2024 we continue to host both online and in-person ‘Natter’ supp UK - having held almost 50 already this year (Jan-Mar). We know it can sometimes be a bit daunting to join a group, but please feel r to attend - in person or on-line - sometimes being amongst others who offer u We are also delighted to be able to announce the expansion of our Webi-Nat speaker and Q&A - providing our community with an opportunity to ask the e theme or topic - where you’ll be able to listen to and take part in discussions our neuroendocrine cancer community. Recordings of the talks/presentations (but not the Q&A) will be made availab WHAT’S COMING NATTER AND WEBI-NATTER SUPPORT GRO Our April Webi-Natter will take place on Monday 15th April at 18:30 discuss the highlights and updates from ENETs 2024. If you would like to join one of our Natters, and/or Webi-Natters, visit our Nat and/or Events page for further information and instructions on how to registe
CLICK ON THE IMAGE ABOVE TO READ ABOUT OUR ONLINE NATTER SUPPORT GROUPS
UP OUPS IN 2024
port groups in various locations around the
reassured that you are more than welcome understanding and simply listening can help. tter programme: online meetings with a guest experts. Each month will have a different around updates and/or key issues that affect
ble to watch via our YouTube channel HERE
0 and we will
tter Calendar er and take part.
BECOME A NATTER GROUP CO-ORDINATOR Support group co-ordinators create a caring, safe and supportive atmosphere that encourages group members to share their experiences. A support group co-ordinator will do more listening than talking and will be resilient and comfortable listening to the experiences and feelings of others. We are always looking for Neuroendocrine Cancer Natter Co-ordinators to help run our support groups. Some of the qualities that make a good support group co-ordinator are: • Good listening and communication skills • High level of empathy • Non-judgemental approach • Confident and able to hold your own in group situations • Respectful of others’ beliefs and opinions • Consistent and dependable
• Resilient around your own experiences • Able to maintain confidentiality at all times If this sounds like you, please CLICK HERE to get in touch
NEWS
The latest news from the Neuroendocrine Cancer UK team...
WELCOME, CRAIG! OUR NEW COMMUNITY FUNDRAISING COORDINATOR! Those who are familiar with Neuroendocrine Cancer UK will
undoubtedly recognise Craig as not only a valued Ambassador who has been living with neuroendocrine cancer for almost ten years but also an incredibly generous and creative fundraiser! His most recent fundraising event was a sponsored fire walk challenge that took place in Glasgow on World Neuroendocrine Cancer Day 2023, raising over £50,000 in the process. In his new role as Community Fundraising Coordinator, Craig will be on hand to provide support
We reached out to Craig for his thoughts on this exciting new challenge: “I’m really excited about this opportunity, over the last few years I’ve been able to set up some fantastic events and help support Neuroendocrine Cancer UK. My hope is I can now take this experience and support others in the community, raising awareness and vital funds so Neuroendocrine Cancer UK can continue on this vital work”. Thank you, Craig and welcome to the team! and inspiration to all our wonderful fundraisers and with all his fundraising experience, we believe he will be a great asset to the team!
www.neuroendocrinecancer.org.uk
NEW BEGINNINGS: OUR NEW AMBASSADORS
WELCOME Caroline, Carolyn and Polly: who have joined our Neuroendocrine Cancer Ambassador Group. CAROLINE : I’m 56 years old and I live in Port Talbot with my husband and daughter. I also have a son and a beautiful grandson who is 5. My experience has been that I feel that I have had to fight and challenge and find a lot of information about Neuroendocrine cancer myself.
Being well informed has enabled me to manage my condition and have meaningful conversations with my oncologist. I also attend the monthly natter meetings in Swansea and have gained lots of knowledge from these.Several people whom I know have reached out to me for help after getting a cancer diagnosis and I have been able to provide them with support and information. As an ambassador I would like to give back to the community that has helped and supported me since diagnosis.
CAROLYN : in August 2005, I was in hospital recovering from bowel surgery when a nurse came up to me and said: “Don’t stop eating your lunch, I’ve come to discuss your cancer with you”. . . I was 49, a single parent with 2 daughters and I really thought it was the end. The nurse went on to tell me that I had a very rare cancer called ‘Carcinoid’ (very old terminology now) and they had only seen one other patient with this in the previous 5 years. I am an active member of NCUK support, having had 18 years of
experience of living with NETS. I have participated in surveys & meetings with drug companies & Cancer Research, face to face, online & by phone. As an ambassador I would like to promote & spread awareness of this cancer & to help other patients.
POLLY : I am 68 years old. In a former life I was a Business Analyst and IT Project Manager: I worked within NHS IT for over 10 years, regularly attending conferences and making presentations to large groups of Medical Professionals. Taking early retirement in my late 50s, was to have been a venture into the unknown . . . but what followed was not quite what I had in mind. . . I’m a partner of someone living with a diagnosis of Neuroendocrine Cancer since 2014. I have been fully involved from day 1, attending all appointments, being the second pair of ears in the room, and playing the role of notetaker and advocate where needed.
I’ve been part of the Friends and Family Natter Group since it started and have found it extremely useful in understanding how each of us are coping with this ‘new role’ we find ourselves in. I believe that the impact on those close to a person who has been diagnosed with any cancer is frequently underestimated. I think to have someone with perhaps a different perspective to the other Ambassadors could help. I believe as ‘carers’, we have a responsibility to our own wellbeing: If we do not take care of ourselves how can we hope to care for someone we love. I welcome the opportunity to represent Friends and Family within the Ambassador’s group, and the wider audience, and hope to advocate for the sometimes unspoken role of the carer. Find out more about our new, and currently serving, ambassadors and how to become one HERE
www.neuroendocrinecancer.org.uk
NEWS
If you have any news you’d like to share with us, please email comms@nc-uk.org
NEW BEGINNINGS: OUR NEW TRUSTEE
Welcome David - our new Trustee! “It is an honour to be appointed a Board Trustee for Neuroendocrine Cancer UK. I was diagnosed with Pancreatic Neuroendocrine Cancer in 2022 and have benefitted from the support and services provided by Neuroendocrine Cancer UK, including meeting a great group of people at the Natter Group. I am looking forward to bringing perspectives as a patient and from my professional life to support the Board, Catherine and the team with their continued great work assisting the growing number of people facing the unique challenges this disease presents”.
Our Values • Equality of care for all Neuroendocrine Cancer patients in the UK • Excellence in support, care, treatment and research • Fair allocation of national resources and inclusion in national policies and strategies for all cancer types • Collaborative working and building an accessible, approachable fraternity • Honesty, transparency and integrity to promote confidence and trust in the charity
www.neuroendocrinecancer.org.uk
RARECAN UPDATE:
RARECAN’S NEW SCREENING PROGRAMME IDENTIFIES CLINICAL TRIAL OPPORTUNITIES FOR NEUROENDOCRINE CANCER PATIENTS
We are often told by our community that it is difficult to find information on clinical trials, and that the information around clinical trials can be difficult to interpret and understand if you don’t have a scientific or medical background. Even when information is found, the detail is complex and it’s hard to know where the trial is taking place, or whether or not you would be eligible to participate in it. We formed a partnership with RareCan in the Autumn of 2023 with a view to improving access to clinical trial information for people with neuroendocrine cancer. This was brought to us by a member of the neuroendocrine community, Martin, who originally found RareCan while searching for information about what he could do to help himself and others who may find themselves in the same situation as him. His introduction has seen us make progress in a number of ways. RareCan aims to support patients to find a clinical trial that may be appropriate and after a telephone call can provide patients with information to share with their medical teams, empowering them to take the lead when discussing clinical trial opportunities and what their options might be. In the pilot, 9 patients with a neuroendocrine cancer diagnosis have joined the RareCan community, 4 participated in a screening conversation, and of these, 2 were found to have a potential match to a trial and have received reports highlighting access opportunities.
If you would like to get involved, you can visit their website by CLICKING HERE and register for an account to have a call with a member of their team who can discuss potential trial possibilities with you. These members can now take this information back to their clinicians when they next discuss their treatment options.
www.neuroendocrinecancer.org.uk
A DAY OF FILMING On Wednesday 14th February, CEO, Cathy and a number of generous members of our community, met in Leamington Spa to film a collection of videos highlighting the impact of Neuroendocrine Cancer on daily life. We are so grateful to those who shared their experiences of neuroendocrine cancer from different perspectives; the ‘patient’, ‘the friend’, ‘the partner’ and ‘the daughter’. It was an emotional day discussing some personal insights, but there were also some laughs along the way. The videos are for a corporate website where they hope to raise awareness of neuroendocrine cancer and the effect it has on people’s everyday lives. Once we have seen the final films we will of course share a link. Thank you again to each and everyone of you who participated in
this project, including: Debra Houston, Steve Bowman, Samantha McCann, Emma Ramsey and Nicky Tetlaw. Here are some photos from the day...
G WITH CEO, CATHY & OUR INCREDIBLE NEUROENDOCRINE CANCER ADVOCATES
WHERE IT ALL BE Here at Neuroendocrine Cancer UK we are extremely proud of our ongoing Since it began in 2022, we have released over 30 episodes including a ‘take Lead, Lisa all about research. In the latest season of the podcast, and the first episode of the 2024 ‘Not Ju Catherine Bouvier and guest Peter Gwilliam reflect on the last 21 years of N Chair Trustee of Neuroendocrine Cancer UK and co-founder, shares insight In the late ‘90s, after Peter’s wife Liddy received a diagnosis, their journey u known from ‘Drop the Dead Donkey,’ faced a turbulent diagnosis of neuroen Carcinoid. Recognising the lack of information and experiencing the isolatio Peter, Liddy, and a small group established a support network, envisioning a support. Following Liddy’s passing, Peter was determined to carry on their work. In 2 along with Catherine Bouvier (now Neuroendocrine Cancer UK’s CEO). At th of the charity then known as NET Patient Foundation. In this episode, Catherine and Peter offer a glimpse behind the scenes, unra charity trustees, tracing the journey from the inaugural support group meetin nation with over 200 support groups.
Twenty-one years later, despite numerous achievements, challenges persist in achieving earlier diagnosis and awareness. Catherine and Peter delve into some exciting projects and campaigns planned for 2024. Click on the images to the right to listen and CLICK HERE to visit our website to view all past episodes. CLICK HERE to donate and support the show, as well as the continued work of Neuroendocrine Cancer UK.
EGAN
NOT JUST NE CANCER PODCAST FEATURE
podcast series ‘Not Just NE Cancer’. eover’ series from our Campaigns
ust NE Cancer’ podcast series, host Neuroendocrine Cancer UK. Peter, the ts into the organisation’s evolution. unfolded. Liddy, a Comedy Director ndocrine cancer, then known as on of an uncommon cancer diagnosis, a close-knit community offering mutual
2006, Peter met with two neuroendocrine cancer patients, Andy Geech and Catherine Kalamis, he time, Catherine was a specialist neuroendocrine (NET) nurse. This meeting led to the creation
aveling the history of Neuroendocrine Cancer UK. They emphasise the role and significance of ng in Birmingham in 2002 to a helpline receiving a handful of calls to now supporting the entire
My ‘Friend
STORIES & EXPERIENCES
In June 2021, I was diagnosed with an 11cm tumour on the tail of my pancreas , a liver biopsy at The Christie NHS Foundation Trust in Manchester, my consu August 2021. I was made aware that they couldn’t operate on my cancer or cure
Armed with my tablets and a spreadsheet on my fridge, my chemo journey began. I knew friends expecting to feel unwell at times although I had been told that I shouldn’t lose my hair (a big plus!) I always took my tablets at the same time each day, the Cap. tablets with my breakfast and evenin After about 5 months on the chemo tablets my main tumor was beginning to shrink and I was getti the weight I lost is starting to go back on again!). I am lucky in that I have very few side effects from the tablets, I was sick once in the first couple o nails are very flaky. But otherwise, for some reason, my body is coping with the chemo very well. I have now just started my 30th month on Cap/Tem. The tumour on my pancreas has shrunk to 6 otherwise, I am back to enjoying the things I used to enjoy – gardening, walking, singing, church a At the age of 74, my life is full again. I am now able to forget about the cancer for most of the time ‘F’s’ family, friends and faith. I obviously don’t know how long I can continue on the tablets but whi I hope this will give some of you who are recently diagnosed with neuroendocrine cancer a more p more than me. And can I give a huge vote of thanks to all the staff at The Christie who are always For the previous six months, I had slowly been getting more lethargic. I could only walk for about h weight weekly (which I quite enjoyed) and had completely lost my appetite for cake (very unusual) having side effects from recently being put on blood pressure tablets. When I reported these symp rolling with blood tests and scans. Three months later I was given my diagnosis . To be honest it was a relief to know the diagnosis. Although for the first year, I thought I had pancr the pancreas’ when doctors talked about my cancer. At this point, the word ‘neuroendocrine‘ had n to me).
Finding Strength in Community: Carole’s Neuroend
Carole’s Story Neuroendocrine Cancer Site: Pancreas Hospital: The Christie, Manchester
Carole Shaw, also known as Carole Wickets, reflects on her journey with neuroendocrine cancer a Initially diagnosed with pancreatic neuroendocrine cancer in 2012, Carole navigated through vario Cancer UK community. She shares her experiences of treatment, including a distal pancreatectom participation in a gallium 68 PET scan trial. Despite feeling uncertain after being discharged from t the Neuroendocrine Cancer UK community. She emphasises the importance of seeking support a Cancer UK. CLICK HERE to read Carole’s story in full.
d’, CAPTEM by Cynthia
, with metastases in my liver and lymph nodes. After ultant decided to put me on Cap/Tem chemo tablets in e me, but they could help to improve my quality of life. half an hour before needing to sit and rest. I was losing ) but I was not in any pain. I thought I was probably ptoms to my amazing GP, he immediately set the ball
reatic cancer as I just listened to the words ‘tumour on no meaning to me (thank you Kate for explaining things
who had had chemo treatment and many had really struggled with side effects so I was ). ng meal, then Tem. and Ondansetron (for any nausea) on an empty stomach just before bedtime. ing my energy back. I stopped losing weight and started to enjoy cake again (the downside is that
of months, I get constipated when I am on both tablets, I have periods of sleeplessness and my
cm and is stable. My other tumours are also stable. I occasionally have a nap during the day but activities, organising concerts and socialising. e, knowing that I have the best care at The Christie. The things that keep me so positive are my 3 ilst they are continuing to work I will continue to have my monthly chemo. positive perspective, although I do know that many people with neuroendocrine cancer suffer so caring and cheerful, no question is ever too much trouble for them to answer.
docrine Cancer Story
and the support she found through Neuroendocrine Cancer UK. ous challenges, including the aftermath of a scam and finding solace in the Neuroendocrine my and monthly Sandostatin injections, highlighting her transition to The Christie Hospital and the hospital, Carole finds comfort in the enduring friendships and support network formed within and remaining connected, expressing gratitude for the unwavering support of Neuroendocrine
NETTER-2 STUDY RE LOOKING BEYONG THE HEAD
26th January 2024 The latest breakthrough in neuroendocrine cancer treatment comes from the NETTER-2 trial, where Lutetium (177Lu) oxodotreotide, a radio-labeled somatostatin analog, has shown remarkable success in treating high-grade advanced gastroenteropancreatic neuroendocrine tumours (NETs). Published at the ASCO Gastrointestinal Cancers Symposium, the results indicate a 72% reduction in the risk of progression or death, establishing a potential first-line option for patients with well-differenti - ated, high-grade tumours. While the findings are promising, real-world implementation issues like availability, accessibility, and affordability need consideration. The positive results offer hope but also raise questions about the treatment’s broader application and patients’ indi- vidual preferences and expectations. For an indepth explanation of this breakthrough and its implications for patients, please visit our website by CLICKING HERE.
RESPONSE TO NETTER-2 REPORT:
” … Results from NETTER-2 were pu combination with long-acting octreoti advanced G2 and G3 tumours. Resu (PFS) to 22.8 months in the Lutather analysis of secondary endpoints inclu Importantly this study looked at using advanced neuroendocrine neoplasm of neuroendocrine neoplasms as wel Dr Amy Eccles, Consultant Radiologi
ESULTS DLINES
ublished over the weekend. The study’s primary endpoint was to prove that Lutathera in ide prolonged progression-free survival (PFS) in GEP-NET patients with well-differentiated, ults included meeting the primary endpoint with an extended median progression-free survival ra and octreotide LAR arm compared to 8.5 months with high-dose octreotide LAR alone. Data uding overall survival and long-term safety data continues. g Lutathera as a first-line molecular radiotherapy with long-acting octreotide in patients with ms. It strengthens evidence for the use of molecular radiotherapy earlier in the treatment pathway ll as supporting use in well-differentiated G3 NENs.” ist at Imperial College Healthcare NHS Trust London, UK
CAR T-CELL THERAP FIRST-IN-HUMAN TRIAL FOR N
In 2024, a first-in-human trial of CAR T-cell therapy in NETs will begin, made University of Pennsylvania, USA.
WHY CAR T-CELL THERAPY MATTERS: CAR T-cell therapy, or Chimeric Antigen Receptor T-cell Therapy, represents own immune cells to target and destroy cancer cells. Dr. Hua's leadership in the boundaries of NET research. Here is an exert from the Neuroendocrine Tumor Research Foundation an The Neuroendocrine Tumor Research Foundation celebrates a significant mi tumors (NETs) will open in 2024. NETRF supported the early-stage, preclinic Chimeric Therapeutics, an Australian leader in cell therapy, built upon the pre 2101. In October, Chimeric announced that the FDA approved CHM 2101 for the safety and efficacy of the therapy. CHM 2101 is poised to be the first CDH “NETRF is proud to have supported Dr. Hua’s research, which has led to this NETRF’s impact on the NET research landscape by supporting early high-ris research helped to ensure that there was a team focused on applying CAR T overlooked. NETRF’s involvement with this research began in 2014. Lauren Erb, former N Hua, MD, PhD, and David Metz, MD at the University of Pennsylvania to urg followed by a 2018 Petersen Accelerator Award to Dr. Hua. “Congratulations 1 trial, says Erb. “This is a true testament to the impact NETRF can have on patients and in less than ten years they have done that.” Over the years, significant progress has been made in cancer immunotherap promising immunotherapy avenue is the use of CAR T cells, which are T cell cancers, their use in solid tumors has been hampered for several reasons inc without harming the patient’s normal cells...
CLICK HERE TO READ THE FULL ARTICLE
PY NETS IN 2024
e possible through investment to Dr. Xianxin Hua at the
s a cutting-edge approach to treating NETS. This innovative therapy involves modifying a patient's bringing this technology to human trial is a testament to the impact of patient support in pushing
nnouncement: ilestone in cancer therapy: a first-in-human CAR T cell therapy clinical trial for neuroendocrine cal research that led to the development of this therapy. eclinical developments from Dr. Hua’s lab and developed the CDH17 CAR T cell therapy, CHM r a clinical trial, which will begin patient enrollment in 2024. This first clinical trial will investigate H17 CAR T cell therapy in clinical trials, potentially revolutionizing the treatment for NETs. s important clinical trial,” said Elyse Gellerman, CEO of NETRF. “This milestone demonstrates sk, high-reward science to develop new treatments.” NETRF’s investment in this laboratory T cell technology to neuroendocrine cancer, an uncommon cancer that could as easily been NETRF Director of Research, initiated the collaboration by contacting Carl June, MD, Xianxin ge them to investigate the use of CAR T for NETs. A 2014 NETRF grant funded the initial work, to everyone involved in developing this potential therapy from an exciting possibility into a phase patient care. Years ago NETRF had a desire to accelerate the development of this therapy for
py, which includes treatments that empower a patient’s own immune system to fight cancer. One ls engineered to target and kill cancer cells. While CAR T cells have shown success in blood cluding difficulty identifying suitable targets on cancer cells that can be recognized by the therapy
ADVANCING NEUROENDO AN UPDATE Research is fundamentally important as a means of providing a better unders are very proud to be using our Advancing Research campaign to have a mea raise funds for NC research to support those with the condition both today an their generous donations. Thank you so much for your support, we really app
NEUROENDOCRINE CANCER S
This is a new role in partnership with the Royal neuroendocrine cancer before, so we are very e neuroendocrine cancer among the wider surgica We are absolutely delighted to announce that M been appointed as the first neuroendocrine can Society and is based at University Hospital, Birm The SSL is a 3 year role, its aim is to establish t
The primary goals of Mr Ford’s research will focus on understanding the valu growing and when advanced, people can live a relatively long time. Surgery a major operation and could expose patients to harm with little benefit. Patien is uncertain if patients would be willing to be randomised (allocated by chanc patients. Mr Ford has said “I am absolutely delighted to have been appointed as the S investment for Neuroendocrine Cancer UK and I am very grateful for the tirel without which this role would not have been possible. I will use my time in po improve the quality and length of life for people living with NETs.” We look for community. CLICK HERE to listen to Lisa and Sam on episode 9 of the ‘Not Just NE Can world of surgical research in neuroendocrine cancer, what surgical research importance in advancing our understanding of this rare cancer and much mo
OCRINE CANCER RESEARCH
standing of any disease and therefore improving understanding and management options. We aningful impact on how neuroendocrine research is done. The objective of this campaign is to nd in the future. We are so grateful to our community for enabling us to fund this research through preciate it.
SURGICAL SPECIALITY LEAD (SSL) College of Surgeons. There are currently 22 SSLs in the UK, there has never been one in excited about this great opportunity not only to progress research but also to raise awareness of al community. Mr Samuel Ford, a consultant Upper GI and sarcoma surgeon specialising in NET surgery has ncer SSL. He is also the research committee chair of the UK & Ireland Neuroendocrine Tumour mingham. two new trials, train-up approximately 30 new investigators and develop a clinical networks. ue of surgery in advanced neuroendocrine tumours (NETs) which is unknown. NETs are slow might prolong survival and improve quality of life; however, it comes with the risks of undergoing nt groups and NET specialists are united in the value of answering this question although it ce) to surgery or not. This trial is to assess feasibility of recruitment and true acceptability to Surgical Speciality Lead for Neuroendocrine Cancers. I recognise that this is considerable less fund raising and support that has come from our patients, their families and benefactors, ost to consolidate the UK research network for NETs and to target larger funding streams to help rward to hearing about all the progress he will make in this role, and will of course update our
ncer’ podcast where they discuss the entails, how it’s conducted, its vital ore.
INCA RESEARCH COMM AN UPDATE FROM OUR CANC The INCA (International Neuroendocrine Cancer Alliance) Research Committee met again earlier this month. Kate Quirk, our patient support co-ordinator, attends to represent Neuroendocrine Cancer UK and reported that great progress is being made fine-tuning the new Ancora AI Clinical Trials tool for patients: https://www.ancora.ai , with better information on trials matching, and updates on expanded access for radiopharmaceuticals trials (ie PRRT/RLT).
Three new research videos by Dr Pamela Kunz, Dr Jaydira Rivero and Dr Enrique Grande have also been added to both our website and INCA’s here: https://www.neuroendocrinecancer.org.uk/research/ or simply click on the videos to watch straight from this newsletter.
Clinical trials Clinical trials are used to find out if new treatments and techniques are safer and more effective than the ones that already exist or discovering if existing treatments can be used in different ways. Without trials we really cannot make progress. You may be offered the choice to take part in a clinical trial as part of your treatment. Before you decide if a clinical trial is right for you think about the pros and cons, ask questions and find out what it involves.
In the ‘Research, Clinical Trials’ guide we cover topics such as: • How Clinical Trials are Run • Join a Clinical Trial • Finding a Clinical Trial • How to use Clinical Trials databases • Clinical trials FAQs
CLICK HERE TO DOWNLOAD THE GUIDE AS A PDF
MITTEE CER SUPPORT CO-ORDINATOR, KATE
https://youtu.be/1SC9PAqoAbc?si=VumRk2_hm- J0w4UbV
https://youtu.be/eEGaWCHjmmo?si=MN5S_TwB7C9F- WM1w
https://youtu.be/lFyrU7idFUA?si=0cQvZ7Bge-9ulH8i
DAILY DIP FOR DAVE! Our wonderful fundraiser, Ruth has been taking a dip in the sea each day si October 2023 and she is aiming to continue for a whole 365 days in order to money for Neuroendocrine Cancer UK after her husband, Dave was diagno Neuroendocrine Cancer earler in 2023. In her own words, here is Ruth and Dave’s story: In 2008, Dave was first diagnosed with cancer in his bowel It was successfu removed and life went on. Earlier this year (2023), Dave’s health took a turn for the worse and after a s investigations he was diagnosed with multiple secondary Neuroendocrine tu an incurable form of cancer that has spread to his liver, lymph nodes, bowe and bones. At only 56 years old, this is a devastating diagnosis. Dave has been undergoing monthly hormone injections since June 2023 to control the growth and activity of the tumours. This would appear to be unsu in stopping the tumours growth so we are now waiting for more scans and a biopsy before a decision is made on alternative treatment options. It’s a very emotionally draining process and one we are all struggling with. In the meantime we live day to day with the impact of this disease, both me brought so many challenges we did not expect. However we are trying to find happiness every day and make the most of th I am fundraising for Neuroendocrine Cancer UK to support research into thi I am taking on a personal challenge - a daily dip in the sea for a year - to ra I have been swimming in the sea for a couple of years but decided to challe once a month) Some days in the winter it may be a quick jump but I will try or work commitments that take me to landlocked places, then i will do a dou least 365 dips between the 9th October 2023 and the 9th October 2024. I am hoping that friends and family will join me sometimes and that people a send me their pictures. We will incorporate silly hats , celebrate special day
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CLICK HERE TO VISIT RUTH’S FUNDRAISING PAGE TO READ HER UPDATES AND TO DONATE
he time we have now whilst we are still able. is rare and aggressive form of cancer. aise awareness and funds for this cause.
enge myself to get in every day ( and drag Dave in at least my best to get in . If it is impossible due to storms, illness uble or triple dip on other days to make up for it. I will do at
around the country might have a distant dip with me and ys and try to have some fun along the way.
FUNDRAISE FOR NEUR
We love seeing all the creative fundraising ideas that our community co with! If you’d like to support Neuroendocrine Cancer UK with your very or challenge, please read on... Get ready to embark on a thrilling journey where you can push your lim embrace daring adventures, and even unleash your inner mischief, all i pursuit of raising funds for a great cause! Here are a few ideas for your next fundraising event or challenge: RUN, TREK, OR CYCLE: Lace up your shoes, tighten your backpack, on your trusty bicycle for a heart-pounding, adrenaline-fueled challenge leave you breathless and exhilarated. SKYDIVING: Take a leap of faith and soar through the sky, feeling the wind and the exhilaration of defying gravity, all while making a significan through your fundraising efforts. ORGANISE YOUR OWN EVENT: Let your creativity run wild as you c experience that will not only raise funds but also leave a lasting impress everyone involved. RAISING FUNDS ONLINE: Harness the power of the digital realm and the internet into your fundraising playground. With endless possibilities fingertips, you can engage with supporters from around the world, sprea message and generating funds like never before. Prepare to dive headfirst into an awe-inspiring world of fundraising poss where challenges become triumphs, adventures become memories, an antics become heroic acts of generosity. Join us on this extraordinary journey as we make a profound difference CLICK HERE to visit the fundraising page on our website for further info
ROENDOCRINE CANCER UK
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NATIONAL RACES
Each year we are in awe of the amazing sporting achievements taking p community. Throughout 2024, Neuroendocrine Cancer UK has guaranteed places i races:
BELFAST CITY MARATHON 5TH MAY 2024
EDINBURGH MARATHON 26TH MAY 2024
GREAT NORTH RUN 8TH SEPTEMBER 2024 *FULLY BOOKED*
CARDIFF HALF MARATHON 6TH OCTOBER 2024
GREAT SOUTH RUN 20TH OCTOBER 2024
If you are interested in applying to fundraise for Neuroendocrine Cance one of these races, please CLICK HERE to complete our application fo
place in our
in the following
er UK by running orm
CARCINOID HEART D DEVISING A NATIONAL STRAT The UK & Ireland Neuroendocrine Tumour Society (UKINETS), along highlight the challenges of managing carcinoid heart disease (CHD) an working to create a national strategy for the management of CHD. Neu initiative to include the experience of those with CHD. In the UK, Carcinoid Heart Disease likely affects 30-50 patients per ye develop features of heart failure and suffer rapidly declining nutrition w patients is challenging and requires many experts working closely toge During the 3rd International Carcinoid Heart Disease Conference, held Centres of Excellence in the UK. These would meet criteria set by a U At the beginning of February, a focus group was held with those living and management of their condition. The focus group also discussed w feedback on the initial concept of the UKINETS certified CHD centres. circulated more widely to the NET and cardiac community for review a project forwards.
LONDON NORTH WEST UNIVE We have been working with the Nurse Specialist teams (e.g., Co Through conversations and mee seen that they are taking on mor them how they (and their patient We have now delivered 2 teachi 2 HPB and Upper GI) “the feed valuable” with a 3rd session pla We have also provided bespoke registration level, across other te the UK - and are always happy t
CLICK HERE to read about Carcinoid Heart Disease in the Virtual Patient Handbook
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DISEASE TEGY
with international NET and cardiac experts want to nd devise methods for improving outcomes. They are uroendocrine Cancer UK have been supporting with this
ear with carcinoid syndrome. Additionally, patients can with weight and muscle loss. Management of these ether to provide a safe and effective service for patients.
d in Sheffield in December 2023, the delegates agreed to rationalize services to 3-5 UKINETS expert panel. g with CHD to understand their experience of living with the disease and of the treatment what an ‘ideal service’ would look like for a carcinoid heart disease patient and gathered . This feedback has been added to a draft consensus document which is now being and comments. The next stage of this process will be to collate that feedback and take the ERSITY HEALTHCARE NHS TRUST: Site-specific CNS education Trust to provide a series of lunch-time educational sessions for their site-specific Clinical olorectal). etings with the teams and their leads, their Macmillan Senior Nurse Philippa Hand, has re and more responsibility for those with neuroendocrine cancer and discussed with ts) might best be supported in both their practice and professional development.
ing sessions to the teams (1 Colorectal, dback has been extremely positive and anned (for the Lung CNS team). e teaching sessions - including a pre- eams, Trusts and organisations and across to discuss opportunities and options.
21st ANNUAL ENETS NIKIE, LEANNE AND LISA REP This year’s ENETs was a bit special - ENETs as a formal professional participants (895 onsite, 269 online) attending the annual conference The UK’s own Professor Caplin, our charity’s patron, was one of the s chair, for a 2-year term of office, in 2014. Reflecting on the past 20 years, amongst his personal highlights, he in and their representation on the ENETs Advisory Board and the promo “Patients are central to the cause of ENETs. Patient advocacy is s ‘ownership’ of research and ethical approvals. We need to work t in ENETs can achieve even more”.
The Annual INCA/EN patient advocates and specialists in neuroen time, less formally, wi CLICK HERE to read
ENETs 2024 marked a record year for abstracts - with 317 abstract chosen for oral presentation (including those we submitted) plus 12 ab Open Access to all accepted abstracts is available by CLICKING HER booklet) But back to Day One, which is usually dedicated to ENETs Postgradua different: it provides an overview on where we’re at with diagnostics, tr and guidelines - highlighting sessions that would take place over the f PG course included a session on whether “epidemiology affects the ca - so please continue your fantastic participation in our surveys and stu Professor Thakker on MEN syndromes (1-5), as well as an exploration developments in neuroendocrine cancer care. As you’ll see from the p understanding and approaching this.
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S CONFERENCE PORT BACK
society, celebrated its 20th year: with 1,164 in Vienna. society’s 2004 founding members - becoming ncludes the promotion of specialist nurses otion of patient advocacy: so important and yet patients have little together on improving this...Together we
NETS Symposium was held Thursday March 15th, 2024, showcasing the joint strategy of d ENETS experts in reaching out to educate primary care physicians and other medical ndocrine neoplasms detection and patient management. It was also a joy to spend some ith other advocates from across the world. d the INCA report.
ts being approved: around 30 bstracts for poster presentation. RE (ENETs 2024 abstract ate Course and this year was no reatments, best practice models following day and a half. The are of patients” (answer: Yes udies!!) and a fantastic talk by n of new and known targets and picture - there’s a complexity in
21st ANNUAL ENETS But what of treatments and innovations? I hear you ask! NETs: Ongoing work regarding somatostatin analogues - improving de currently in phase III study in acromegaly (NCT05192382) and Phase reducing flushing and bowel movements - as yet to assess anti-tumou A randomised trial of PEN-221 for midgut NETs is in development, DE (meaning 4 injections/yr rather than 13 - if on a 28 day cycle) - the OX CAM2029 a novel, ready-to-use, long-acting, slow release Octreotide LAR or lanreotide autogel in patients with advanced, well-differentiated And the potential for Octreotide hydrogel implants? (trialled in acrome NECs: traditionally treated first line with Platinum-based chemotherap This remains a recommended first-line option - however, there have b following this: NCT05058651 : phase II/III study evaluating the addition of the Atezoli carcinomas that originate outside the lung. NCT06102746: aims to explore whether the combination of surufatinib treatment for patients with advanced gastric neuroendocrine carcinom NCT02687958 : Study of Everolimus as Maintenance Therapy for Meta 2nd line therapies: including BEVANEC, NETTER-2 (CLICK HERE TO randomised study in second-line treatment. From initial studies, Immunotherapy alone, or even in combination, ma Chemotherapy + DUAL Immunotherapy. New targets e.g. DLL3: researchers have found expression of DLL3 in DAREON-5: A study to test whether different doses of BI 764532 help NCT04471727 : A study in patients with advanced cancers associated A special post-ENETs 2024 focused Webi-Natter will take place in Apr the event to catch up on the recording.
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