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INCA Monthly Newsletter - April 2018 News Update
INCA Members' News
Medical News

 INCA at the 2nd Annual EURACAN Conference, Oxford, UK, 4-6 April 2018

Entitled “Sustainability and Innovation in Rare Cancer Management,“ the 2nd Annual EURACAN Conference, chaired by Prof Jean-Yves Blay and Prof Bass Hassan, offered an overview of the latest updates in rare cancers management. The conference covered multiple sessions over three days including: the Rare Cancer Pathway, facilitating communication between healthcare providers and patients, enabling technologies for rare cancer diagnosis, management and treatment; rare cancer drug development; payers, healthcare providers and patients’ perspectives.

INCA was represented by Cathy Bouvier, Jo Grey and Teodora Kolarova - European Patient Advocacy Groups (ePAGs) for the Neuroendocrine and Endocrine domains. At the Oxford meeting it has been asserted again that ePAGs’ role is instrumental to the success of EURACAN, whose aim is to facilitate timely diagnosis and access to treatments for patients anywhere in the EU.

INCA Members' News

UK Research Registry Now Collecting Data for MEN1 and pNETs

UK National Research Registry for MEN1 and pancreatic neuroendocrine tumours (pNETs) is now collecting patient data. Patients can sign up to AMEND's specific mailing list here in order to receive more information shortly about how to notify their specialists to get involved.

2nd Video from CCF’s 50th Anniversary Series is Now Online


The Carcinoid Cancer Foundation’s video series continues with “Fear and Hope.” Mack Caudill was devastated when he was diagnosed with carcinoid in 1997, especially when the doctor said, "You have cancer."  Fear was his initial reaction but his faith, a loving wife, wonderful friends, and becoming the leader of the neuroendocrine cancer support group in the state of Georgia led him to living with the disease with hope and optimism. This video is part of a series in celebration of the Carcinoid Cancer Foundation's 50th anniversary in 2018, made possible by the generous support of Lexicon Pharmaceuticals as part of the Fit-to-Fight series.Watch the video on CCF's Youtube channel, or on Facebook.

NET Patient Foundation: Research to Improve Clinical Experience and Understand Patients' Concerns


The NET Patient Foundation is committed to research into neuroendocrine cancers. This research can take different forms, but research that can have potential immediate impact in improving clinical experience, and understanding of the patients concerns is so valid.
The NET Patient Foundation has  supported 2 recent publications, which have both utilised the patient experience to frame the work from inception. We are extremely grateful to our community for taking part in these projects and sharing their experience, fears and perceived needs.
Presenting symptoms and delay in diagnosis of gastrointestinal and pancreatic Neuroendocrine tumours.
Basuroy RBouvier CRamage JSissons MKent ASrirajaskanthan R.
Full article.

Self-reported side effects in neuroendocrine tumour (NET) patients prescribed somatostatin analogues - the role for specialist dieticians and nurses.
Whyand T, Bouvier C, Davies P
The latter has been accepted for publication in the British Journal of Nursing and was presented at ENETs 2018.
Supporting patients suffering with side effects of NET treatments, including SSA’s contribute significantly to workload of NET Dieticians and Nurses. It is therefore important to ask what is wrong, to question how severe the patient experience has been, and to help raise awareness amongst NET health professionals. The results show what symptoms patients report whilst on SSA’s, and how severe these are. Constipation during SSA use is the most commonly reported symptom. Symptoms thought to be side effects during SSA use may not always have been reported to pharmaceutical companies over the years.

Full slide set.

Unraveling the Causes of Small Intestinal NETs

The first step in curing a disease is understanding it. Unfortunately, there is a lot we still don’t know about small-intestinal  NETs (SI-NETs). That’s why NETRF invested in an international team to look for a cause. The principal investigators are:
  • Matthew Meyerson, MD, PhD, Director of Cancer Genomics at Dana-Farber Cancer Institute, Professor of Pathology at Harvard Medical School, Director of Cancer Genomics at the Broad Institute.
  • Eric Nakakura, MD, PhD, Gastrointestinal Oncology Surgeon, Professor of Surgery, at University of California, San Francisco.
  • Chrissie Thirlwell, MD, PhD, FRCP, Senior Lecturer and Consultant, Medical Oncologist, University College London Cancer Institute and Royal Free Hospital.
Thus far, the team has sequenced over 80 different SI-NETs specimens to study how all the genes in each of these tumors are expressed, and, are now analyzing gene expression patterns common to SI-NETs from different individuals but different from other types of cancers. This will answer a fundamental question: Do SI-NETs form a unique class of tumors, with a unique molecular profile?
This NETRF Accelerator Grant, “Finding the causes of small intestinal neuroendocrine tumors”  got underway in 2017 and will continue through 2021.
Video  Full Article.

Stronger United: Pheo Para Alliance 2018 Gala


The Pheo Para Alliance will hold its annual gala on May 5, 2018 at the Hyatt Regency Bethesda, 1 Bethesda Metro Center, Bethesda, MD 20814, United States to celebrate the Pheo Para Alliance's merger with the Pheo Para Troopers and honor this year's award recipients.
2018 Award Recipients:
U.S. Representative Leonard Lance - Recipient of the 2018 Cyrus Katzen Humanitarian Award
Giselle and Ben Huberman - Recipients of the 2018 Founders' Award

The Stronger United Gala will welcome Sean Swarner, the first cancer survivor to conquer Mount Everest, who will share his story of perseverance.

Unicorn Foundation New Zealand Fundraising Waterfront Half Marathon

The Unicorn Foundation New Zealand has a growing team of keen walkers & runners who took part in the Waterfront Half Marathon on April 8, 2018 in Auckland, New Zealand. 
Team Unicorn Foundation New Zealand ran to help raise funds and awareness for the work of the organization, which supports and advocates for patients and families affected by neuroendocrine cancer. Every day another kiwi is diagnosed with NET Cancer and lack of access to the right treatment is a major issue in New Zealand. 
Unicorn Foundation New Zealand is the only charity in the country focused on patients with neuroendocrine cancer. Currently NET Cancer patients are self-funding and travel to Melbourne to receive life-changing treatment called PRRT. It costs each patient over $50,000, which many patients simply cannot afford. It is the goal of the organization to help establish PRRT within a NET Cancer specialist centre that will help patients regardless of where they live in New Zealand, no matter what their financial situation is.
Thank you to these special individuals, those who have donated and supported! Go Unicorns!

More info on the event.

Medical  News

Expert Shares Treatment Updates for Neuroendocrine Tumors

The incidence of neuroendocrine tumors (NETs) has increased 5-fold over the past 30 years, making it the second most prevalent diagnosis in gastrointestinal (GI) malignancies, explains Emily K. Bergsland, MD, a professor of medicine at the University of California, San Francisco Helen Diller Family Comprehensive Cancer Center.

“Resection of the disease continues to be a treatment for patients with well-differentiated gastroenteropancreatic (GEP)- NETs and is still conducted in more than 70% of patients with these tumors. However, the recurrence rate for patients who received a resection is 100% at 10 years, changing the treatment paradigm as this was previously considered a curative therapy,” said Bergsland in her presentation at the 2018 OncLive® State of the Science SummitTM on Gastrointestinal Cancers.
Available and emerging systemic therapies are being used to improve these outcomes in patients with NETs, she added. These include octreotrotide and lanreotide, as well as newly approved agents such as lutetium Lu 177 dotatate.

Full article.

JAMA Oncology: Recurrence in Resected Gastroenteropancreatic Neuroendocrine Tumors

JAMA Oncology recently published a Research Letter on "Recurrence in Resected Gastroenteropancreatic Neuroendocrine Tumors" by authors Simron Singh, MD, MPH; David L. Chan, MBBS; Lesley Moody, HBSc, MBA; Ning Liu, MSc; Hadas D. Fischer, MD, MSc; Peter C. Austin, PhD; Eva Segelov, MBBS, PhD. Gastroenteropancreatic neuroendocrine tumors (GEP-NETs) are widely heterogeneous malignant abnormalities.Their natural history is poorly described, with little understanding of recurrence patterns. Surveillance for resected GEP-NETs may include clinical review, laboratory tests, and numerous medical and nuclear imaging modalities. These modalities can increase patient anxiety, may be associated with potential harm (eg, exposure to ionizing radiation), and have not been shown to improve outcomes. Current guidelines vary widely in recommendations, reflecting the lack of data. Information on the natural history and recurrence of the disease may improve patient-centered follow-up of this population. The hypothesis is that GEP-NETs may recur over a longer time course compared with other gastrointestinal malignant abnormalities.

Full article.

The Lancet Diabetes & Endocrinology: Advanced Neuroendocrine Tumours of the Small Intestine and Pancreas: Clinical Developments, Controversies, and Future Strategies

In this Review clinical developments and controversies in the treatment of neuroendocrine tumours (NETs) that are relevant for clinicians and clinical researchers are discussed. It describes advances in genetics, blood-based biomarkers, functional imaging, and systemic therapy of advanced NETs and discuss results of recent phase 3 studies, systemic treatment of advanced disease with peptide receptor radionuclide therapy, biotherapy, chemotherapy, and molecularly targeted therapy, and the potential role of immunotherapy in the treatment of NETs. Suggested treatment algorithms for NETs of ileal or jejunal origin and of pancreatic origin are presented.

Full article.

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