Peptide Receptor Radionuclide Therapy
One of the most significant treatment options for neuroendocrine cancer patients became available with the 2018 FDA approval of Lutathera®, the first radiopharmaceutical for Peptide Receptor Radionuclide Therapy (PRRT). NET experts Dr. Emily Bergsland, Dr. Pamela Kunz, Dr. Erik Mittra and Dr. Jonathan Strosberg describe the treatment, how it works, and the benefits for patients.
Luncheon with the Experts continues
N. Arvind Dasari, MD, medical oncologist at the MD Anderson Cancer Center in Houston, Texas, will be the featured guest for Facebook Live Luncheon with the Experts on Thursday, December 9, 2021 from 12 noon to 1 pm, EST. READ MORE
Neuroendocrine Tumors Awareness Month Webinar
NET patients, caregivers, medical professionals, and all interested in learning more about neuroendocrine cancer are invited to a free webinar hosted by the American Association of Endocrine Surgeons (AAES) in partnership with NANETS, the North American Neuroendocrine Tumor Society. The webinar will take place on the AAES Facebook page, https://www.facebook.com/TheAAES, on Monday, November 29, beginning at 8 pm, Eastern Time. READ MORE
New Guide on High-Grade Neuroendocrine Cancers
Have you or a loved one been diagnosed with high-grade neuroendocrine cancer? There’s a new guide for patients and caregivers, just released by the Healing NET Foundation in observance of NET Cancer Awareness Day, November 10, 2021. Healing NET worked with medical experts, patients, and caregivers to create High-Grade Neuroendocrine Cancers: A Guide for Patients and Caregivers. The publication specifically addresses ways to meet the challenge of a high-grade neuroendocrine cancer diagnosis. READ MORE
Dr. Pamela Kunz Named Woman Oncologist of the Year
Congratulations to NET expert Pamela Kunz, MD, who was named Woman Oncologist of the Year! Dr. Kunz is Associate Professor of Medicine (Medical Oncology), Director of the Center for Gastrointestinal Cancers at Smilow Cancer Hospital and Yale Cancer Center, Chief of GI Medical Oncology and Vice Chief, Diversity Equity and Inclusion, Medical Oncology. The Women Leaders in Oncology award honors a senior professional who is a respected individual in her field and who has modeled excellence in leadership. READ MORE
CCF Announces Partnership with Clarified Precision Medicine
The Carcinoid Cancer Foundation (CCF) and Clarified Precision MedicineTM have partnered to offer neuroendocrine tumor (NET) patients the opportunity to receive an expert review of their tumor sequencing results from any commercially available test, e.g., FoundationOne CDx, Guardant 360, Caris MI Profile. Each patient is eligible to receive, at no cost to them, a ClarifiedSelectTM analysis, for which nationally recognized precision oncology experts provide a ranked list of FDA-approved treatments, off-label therapies, and clinical trials based on their specific tumor DNA. Every ClarifiedSelectTM report is reviewed by members of Clarified Precision Medicine’s Clinical Network to provide a clear, concise, medically-relevant summary of treatment options for patients and their physicians. READ MORE
New NET Nutrition Guide from MENETS
Check out this just released booklet from MENETS, the Middle East Neuroendocrine Tumor Society – Nutrition and Neuroendocrine Cancer, International Edition, written by Tara Whyand, MSc, BSc, dietitian, with contributions from a NET expert physician, registered dietitians, and a NET patient. The booklet is free to download and includes information about vitamins and minerals, weight loss, gastrointestinal problems, carcinoid syndrome, pancreatic and duodenal neuroendocrine cancers, and more. Click here to download the booklet, https://menets.org/nen-nutrition-books.
Second Generation Immunohistochemical Markers: Reflections from Clinical Implementation
This new article from pathologist Carl Christofer Juhlin, MD, PhD, of Karolinska Institutet in Sweden identifies second-generation neuroendocrine immunohistochemical markers. These markers can help identify the site of primary neuroendocrine tumors as well as helping to ensure a proper diagnosis for NETs and poorly differentiated neuroendocrine carcinoma. Read more in this open access article here, mdpi.com/1259126.
Donate to CCF with Cryptocurrency
The Carcinoid Cancer Foundation is now accepting donations in cryptocurrency. Thank you for your support! Click here or on the button below to donate
Unique Opportunity for Neuroendocrine Tumor Patients
For many neuroendocrine cancer patients, access to physicians who specialize in this disease is challenging or simply not possible. The National Cancer Institute, NCI, is offering neuroendocrine tumor (NET) patients a unique opportunity to have a multidisciplinary tumor board review of their medical records and make recommendations about NET treatment options. READ MORE
New Drug Application Accepted by FDA
The U.S. Food and Drug Administration, FDA, has accepted the filing of the new drug application (NDA) for surufatinib as a potential therapeutic option for patients with pancreatic and extra-pancreatic neuroendocrine tumors (NETs). READ MORE
Did you know that the International Neuroendocrine Cancer Alliance (INCA), has free, NET info packets in 10 languages? Click here to select your language and download the factsheets: https://incalliance.org/net-info-packs/. The Carcinoid Cancer Foundation is proud to be a founding member of INCA.
NANETS Issues Position Statement on COVID-19 Vaccination for NET and NEC Patients
A growing body of evidence suggests that patients with cancer have an increased risk of severe COVID-19 infection and related complications. NANETS, the North American Neuroendocrine Tumor Society, has issued a Position Statement regarding the plan for COVID-19 vaccination for patients with neuroendocrine neoplasms (NENs), including well differentiated neuroendocrine tumors (NETs) and poorly differentiated neuroendocrine carcinomas (NECs). NEN survivors and patients with NENs on observation or undergoing cancer treatment should be offered COVID-19 vaccination as long as any components of the vaccine are not contraindicated. READ MORE
Facebook Live Program on Carcinoid Syndrome: Managing Breakthrough Symptoms
Are you newly diagnosed with carcinoid syndrome or have been living with the syndrome for many years?
The Carcinoid Cancer Foundation presented a Facebook Live program on Carcinoid Syndrome on December 14th featuring neuroendocrine tumor (NET) expert Lowell Anthony, MD, FACP, Chief of the Division of Medical Oncology at the UK Markey Cancer Center in Lexington, Kentucky, and NET patient Melanie Bean. The live program offered viewers the opportunity to ask questions of Dr. Anthony and Ms. Bean and covered living with carcinoid syndrome and how to manage breakthrough symptoms.
If you were not able to join us for the live program, it is now available for viewing on CCF’s Facebook page here, https://www.facebook.com/271774129226/videos/2949405928614542. For anyone who is not on Facebook, it is available for viewing on CCF’s YouTube channel here, https://youtu.be/xSLCXjYEb1s.
This special program is made possible with sponsorship by Sun Pharmaceuticals Industries Inc.
CCF Infographic: 6 Questions to Ask Your Doctor
Have you or someone you love been diagnosed with a neuroendocrine tumor or carcinoid cancer? It can feel like a daunting task to figure out next steps and doctor appointments may be overwhelming. You can help yourself or support a loved-one by learning about the disease and preparing yourself for doctor visits. The first visit may be the most challenging, so It’s important to arm yourself with relevant questions. Here we provide you with six questions, specific to neuroendocrine tumors, to ask your doctor. Click here to download the infographic.
Carcinoid Syndrome Website
The Carcinoid Cancer Foundation’s website www.carcinoidsyndrome.org is a space for everything about carcinoid syndrome – from diagnosis and treatment to news and community updates. This site is a great resource for patients, caregivers, and physicians alike – looking to learn more about carcinoid syndrome.
Guide to Understanding Carcinoid Syndrome
Know the signs and symptoms — skin flushing, diarrhea, heart racing . . . it could be carcinoid syndrome! How is it diagnosed, what are the treatment options, what questions should you ask your healthcare provider? Read more in Guide to Understanding Carcinoid Syndrome, from Health Monitor and the Carcinoid Cancer Foundation: https://www.carcinoid.org/wp-content/uploads/2015/10/Carcinoid-Syndrome-Guide-to-Understanding.pdf.
Reaching Those Who Are Still Undiagnosed
To combat statistics showing that it often takes 5 to 7 years for patients to receive the correct diagnosis of a neuroendocrine tumor (NET), the Carcinoid Cancer Foundation has partnered with Advanced Accelerator Applications to create an infographic — Could You Have a Neuroendocrine Tumor— listing common symptoms and misdiagnoses. Please share this broadly in hopes of helping others get the proper diagnosis more quickly. Download the infographic here.