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

 Further Reach of INCA Unmet Needs Initiative


Given the scope of the initiative, which offers huge potential for further reach, INCA Survey on Unmet Needs in the Global NET Community generated a number of abstracts, submitted to the major cancer congresses taking place by the end of the year, including ESMO, NANETS and APNETS.  

Bringing the findings of this research closer to all relevant stakeholders is a key priority, with a focus on reinforcing collaboration with the expert medical communities. To overcome the language barrier and spread the messages to as wide audience as possible, INCA has undertaken translating of the White Paper and all visual collateral including infographics and videos into 7 languages. These resources will soon be available in Chinese (Mandarin), French, German, Italian, Japanese, Russian, and Spanish on the INCA website

INCA has committed to improve information for patients and education about NETs for healthcare professionals, as well as to encourage more support for research with a stronger patient voice and more funding to help patients be active partners in the treatment process. 

INCA Members' News

AMEND to Hold First Annual Training Day for Regional Volunteers

On Friday, 13th July AMEND will hold its first annual training day for 7 new regional volunteers who were recruited within 48 hours of the call going out earlier this year. Their roles will include developing regional groups around the UK for peer support of all those affected by multiple endocrine neoplasia, succinate dehydrogenase disorders and adrenocortical cancer. This type of support has long been called for since only a minority of members can attend AMEND’s Annual Patient Information Day each May. In fact, the project was funded by members of AMEND themselves back in December 2017. AMEND is thrilled to be in a position now to recruit, train and support these important volunteers as they go about their outreach work. In the future, AMEND hopes that these volunteers will be able to provide support directly at hospital level. In the meantime, AMEND's members will benefit greatly from meeting others in their region who are on similar journeys with their conditions.

CCF's Latest Anniversary Video Tells a Wonderful Story of Friendship


CCF’s 50th anniversary video series continues with “Fate and Friendship.” When Xochi and Ellen met little did they know they would form a unique bond. Together, these awesome friends have held each other up, provided comfort during difficult times, and navigated next steps in the journey of living with neuroendocrine cancer. This video is part of a series in celebration of the Carcinoid Cancer Foundation’s 50th anniversary in 2018.
Watch the video on CCF's Youtube channel, or on Facebook.

NET Patient Foundation Launches Packs for New Patients


The NET Patient Foundation is pleased to announce that its pack for new patients is now available. NPF provides this pack to hospitals across the UK to ensure every new patient receives useful and straightforward information created just for them. It contains a USB wristband which includes informative videos and a comprehensive guide to life with a NET and  details of how NPF can support you including: its local NET Natter groups, specialist community nurse team contacts and details of NPF's free counselling service.

The NET Patient Foundation has also developed a new diet and surgery booklet to ensure NET patients have access to reliable dietary information before and after surgery to the digestive system.

NETRF Seed Funding Helps Grow the Field

Two NETRF-funded researchers received Career Development Awards at the 2018 annual meeting of the American Society of Clinical Oncology (ASCO), one of the largest and most respected gatherings of physicians in the field of oncology. The awards, offered by ASCO’s Conquer Cancer Foundation, fund three years of research on patient-focused topics.

Award Winners: Daniel Halperin, MD,  MD Anderson Cancer Center, “Harnessing the Immune System in Neuroendocrine Tumors”
Nitya Raj, MD,  Memorial Sloan Kettering Cancer Center,  “Mutational landscape of pancreatic neuroendocrine tumors—therapeutic implications of genetic evolution     over time   and therapy”
“Our hope is always that NETRF funding helps pave the way for subsequent funding by organizations, institutions, or government agencies,” said Elyse Gellerman, NETRF Chief Executive Officer. “We hope to get promising projects with transformational potential off the ground. These two Career Development Awards affirm our selection of topics and investigators.”

NETRF’s grant support of Raj and Halperin occurred in the last two years. Halperin received a 2016 grant on the immune profiling of pancreatic neuroendocrine tumors. Raj received a 2017 Pilot Project to evaluate the role of liquid biopsy in the treatment of pancreatic neuroendocrine tumors

“The data gathered by these researchers during their NETRF grants played a pivotal role in competing for these prestigious grants, which will help to further the work started with NETRF,” said Effie Tzameli, PhD, NETRF Director of Research. “Each discovered information warranting further study. In this way NETRF’s funding provides proof of concept funding.”

 Full Article.

Pheo Para Alliance Celebrates Merger with Pheo Para Troopers at its 9th Annual Gala


Bethesda, MD – “Stronger United” was the theme of the Pheo Para Alliance’s 9th annual gala in May celebrating its recent merger with the Pheo Para Troopers and raising over $70,000 to advance its mission to support pheochromocytoma and paraganglioma (Pheo Para) patients through research and advocacy. 

Prior to the merger, the Pheo Para Alliance focused on its international role in the advancement of Pheo Para diagnostic and treatment research – raising over $2 million for various initiatives since 2007.  The Troopers, an international patient network, provided critical educational resources to patients diagnosed with the rare condition. Combined, the new Alliance is a global force well poised to make great strides in research, education, and advocacy on behalf of patients.  

“Though they apply different means of support, the end beneficiaries are the same – the patients,” stated Pheo Para Alliance President Emily Collins. “Joining forces makes perfect sense and gives us an opportunity to apply a holistic approach to addressing patient needs.”
The 2018 gala honored U.S. House Representative Leonard Lance (R-NJ) for his leadership as Co-Chair of the U.S. Congress’ bicameral Rare Disease Congressional Caucus and founding Alliance members and longtime supporters Giselle and Ben Huberman.
The gala also featured special guest speaker Sean Swarner from the inspiring True North documentary. Sean, a two-time cancer survivor, not only survived what everyone deemed terminal cancer – twice, he also beat the odds of survival by climbing the seven peaks of the world, including Mount Everest, with only one functioning lung.

About Pheo Para: Pheochromocytoma (Pheo) is a rare neuroendocrine tumor (NET) originating in the adrenal glands, specifically, in a section called the medulla of the adrenal glands. Paraganglioma (Para) is a tumor that is closely related to Pheochromocytoma. It originates from outside the adrenal glands, specifically from the parasympathetic or sympathetic nervous system. Both types of these rare NETs derive from genetic gene mutations and can be benign or malignant.  For more information, please visit th
e Alliance on FB.
Medical  News

Temozolomide/Capecitabine Improves Progression-free and Overall Survival Over Monotherapy in Advanced Pancreatic NETs

The combination of temozolomide and capecitabine resulted in improved progression-free and overall survival (Abstract 4004) compared with temozolomide monotherapy in patients with advanced pancreatic neuroendocrine tumors (NETs).
“Pancreatic NETs are rare epithelial neoplasms that derive from neuroendocrine cells,” said Pamela L. Kunz, MD, of Stanford University School of Medicine. She presented results from the ECOG-ACRIN Cancer Research Group’s E2211 trial during an Oral Abstract Session on June 4. Streptozocin is the only U.S. Food and Drug Administration-approved cytotoxic chemotherapy for this malignancy, and it was approved in 1982; temozolomide is a newer alkylating agent that has clear benefits over the older streptozocin.

Previous research has found that MGMT deficiency is associated with higher response rates to temozolomide and is more common in pancreatic NETs. Further, preclinical work showed that capecitabine can deplete MGMT, and works synergistically with temozolomide. In a study of 30 patients, temozolomide/capecitabine yielded a response rate of 70%. Other small studies have examined other temozolomide-based combinations, with varying response rates and progression-free survival (PFS).

In the new trial, 144 patients were randomly assigned evenly to receive either temozolomide alone or temozolomide/capecitabine. All patients had progressive, grade 1/2, metastatic pancreatic NETs. Patients could not have received prior treatment with temozolomide, DTIC, capecitabine, or 5-fluorouracil, and all patients had progressive disease within the past 12 months.

“This is the first prospective randomized trial of these agents and shows the longest PFS reported for pancreatic NET-directed therapy,” Dr. Kunz said. A central pathology review, as well as image reviews and other secondary analysis, are still pending.

“There are a growing number of treatment options, and now we have prospective data,” said Discussant Emily K. Bergsland, MD, of the University of California, San Francisco. She noted that the grade imbalance, as well as the lack of blinding in the study, could have leant itself to bias in the study. “I think capecitabine and temozolomide will become increasingly used; I think these data are very compelling … but not as strong as phase III data.”

Full article.

Blood Test Offers Hope of Finding Cancers Before Symptoms Develop

Promising new research enables scientists to use a blood test to screen for different types of cancers at early stages.
The test, known as a liquid biopsy, is used to screen for DNA from cancer cells and was able to detect 10 different cancers with good accuracy.

Dr. Eric Klein from the Taussig Cancer Institute at Cleveland Clinic in the United States led the research, which was presented at the annual conference of the American Society of Clinical Oncology in Chicago, the largest gathering of oncologists worldwide.

Most cancers are detected at advanced stages when treatment is more complicated and cure rates are low, the conference abstract states.
The non-invasive DNA blood test isn't yet ready to use in practice, but the test would enable cancers to be detected in the early stages, before symptoms begin, when treatment is more likely to succeed. These types of tests could become part of a universal screening process for cancer.

"Detecting cancer early, before it has spread is one of the most powerful ways to ensure more people are offered treatments which give them a better chance of beating the disease," said Fiona Osgun of Cancer Research UK, who was not part of the study.

The research sampled 1,627 participants, of which 749 were cancer-free and 878 had various types of newly detected, untreated cancer.

Full article.

Long-lasting Radionuclide Therapy for Advanced Neuroendocrine Tumors Proves Effective

 A first-in-human study presented at the 2018 Annual Meeting of the Society of Nuclear Medicine and Molecular Imaging (SNMMI) demonstrates the benefits and safety of a new, long-lasting type of radionuclide therapy for patients with advanced, metastatic neuroendocrine tumors (NETs).

177Lu-DOTATATE, a peptide receptor radionuclide tharapy (PRRT) with radiolabeled somatostatin analogues (peptides), was recently approved by the U.S. Food and Drug Administration for the treatment of NETs. It is the therapeutic part of a nuclear medicine theranostic pairing. Gallium-68 68Ga-DOTATATE is the diagnostic agent used in positron emission tomography/computed tomography (PET/CT) scans that first locates and marks the lesions for follow-up with targeted PRRT delivery directly to the tumor cells which express high levels of somatostatin receptors (SSTRs). Because the PRRT binds to receptors expressed by the tumor cells, healthy cells are unharmed.

This first-in-human, first-in-class, Phase I trial (ID: NCT03308682) investigated the safety and dosimetry of a novel long-lasting radiolabeled somatostatin analogue that adds an albumin-binding Evans blue (EB, an azo dye) derivative to 177Lu-DOTATATE. Albumin, the most abundant plasma protein in human blood, is a natural transport protein and has a long circulatory half-life

Full article.

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