Fear and Hope

CCF’s 50th anniversary video series continues with “Fear and Hope.” Mack Caudill was diagnosed more than two decades ago with #NeuroendocrineCancer. What keeps him going — faith, family, friends, and the support group he leads in Georgia. This video series is made possible with the generous support of Lexicon Pharmaceuticals as part of the Fit-to-Fight series.

The Latest News

FDA Approves LUTATHERA® for Peptide Receptor Radionuclide Therapy (PRRT) for the Treatment of Gastroenteropancreatic Neuroendocrine Tumors

On January 26, 2018 the US Food and Drug Administration approved LUTATHERA® marking the first time a radioactive drug, or radiopharmaceutical, has been approved for the treatment of gastroenteropancreatic neuroendocrine tumors (GEP-NETs).  The drug will be used in Peptide Receptor Radionuclide Therapy (PRRT), which is a form of targeted treatment.  LUTATHERA®(lutetium Lu 177 dotatate) is indicated for adult patients with somatostatin receptor-positive GEP-NETs, including foregut, midgut, and hindgut neuroendocrine tumors. Read more

Endocrinology Society Recognizes Neuroendocrine Cancer Physician and Researcher for Excellence at 2018 Annual Meeting

Congratulations to Amit Tirosh, MD, neuroendocrine cancer physician and researcher, whose work was recognized for excellence at the Endocrinology Society’s 2018 Annual Meeting. Dr. Tirosh will soon be establishing and leading a new NET center at Israel’s largest hospital,Sheba Medical Center at Tel HaShomer, in August. Read more

Please Help Pass a Bill That Could Result in Early Diagnosis for Neuroendocrine Cancer Patients — Deadline Extended to April 16

NET patients, friends and families – we need your help! Greta Stifel, founder of the Stifle Cancer Foundation, NET patient thriver, advocate and political activist, has created and submitted to the State of Connecticut Public Health Committee and legislative branches, Bill 5297, for a critical upcoming vote. Now the bill has to go for a vote on the House floor and then it will need to pass the Senate. The bill has the potential to raise greater awareness about neuroendocrine cancer and to possibly result in earlier, proper diagnosis of NET patients. Read more

A Journey of Hope: Moving Toward a Brighter Future in Neuroendocrine Tumor (NET) Treatment

A newly-released, must-read about five neuroendocrine tumor patients, each with different experiences with Peptide Receptor Radionuclide Therapy (PRRT).  With a foreword, “Hope is Like Air,” by  neuroendocrine cancer specialist Eric Liu, MD, general surgeon, Rocky Mountain Cancer Centers, Denver, Colorado. Special thanks to Advanced Accelerator Applications, a Novartis company, for this publication. Read more

Gallium 68 PET/CT Scanning for Neuroendocrine Tumors — Information and Locations

The US Food and Drug Administration’s June 1, 2016 approval of the Gallium-68 PET/CT DOTATATE scan using NETSPOT® heralded a new age of nuclear imaging in the United States for neuroendocrine tumors. Click here for more information about the scan and locations of where it is being offered throughout the US.  We will be adding to the list on a monthly basis based on feedback from the NET community.

June Luncheon with the Experts in New York City

Join neuroendocrine tumor (NET) patients in New York City on Sunday, June 10, 2018 for a unique opportunity to have lunch with two medical experts. Share your experiences with others who have similar concerns and hear from physicians on issues ranging from NET cancer treatments and surgery to follow-up testing and new developments. Read more and register

Exciting News about Edward M. Wolin, MD, CCF’s  Co-Medical Director

It is with great pleasure that the Carcinoid Cancer Foundation announces that Edward M. Wolin, MD, Co-Medical Director of CCF, has been named Director of the Center for Carcinoid and Neuroendocrine Tumors at The Mount Sinai Hospital in New York City, effective March 26, 2018. Dr. Wolin joins Michelle Kang Kim, MD, PhD, Associate Professor of Medicine, Gastroenterology, and Associate Director of the Center, and all the physicians comprising the renowned multidisciplinary NET team at Mount Sinai. With Dr. Wolin’s arrival he brings with him multiple new treatment options and clinical trials.

Clinical Nurse Educator Program Established for Neuroendocrine Tumor Patients on Xermelo

Are you a neuroendocrine tumor patient who is taking or has been prescribed Xermelo? Lexicon Pharmaceuticals is now offering a new Clinical Nurse Educator Program (CNE) available to you at no charge. Click here to read more

CCF Releases New Infographic for NET Cancer Day: 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.

CCF Offers Toolkit for NET Cancer Day Media Coverage

The Carcinoid Cancer Foundation, with support from Advanced Accelerated Applications, is offering a Media Toolkit to assist organizations or individuals who planning an awareness-raising event to incorporate news media in their efforts.  The Toolkit provides insights on working with print and broadcast newsrooms as well as ideas for leveraging social media. Read more and download the Media Toolkit.

New Carcinoid Syndrome Website

The Carcinoid Cancer Foundation has launched a new website, www.carcinoidsyndrome.org. This website is a space for everything about carcinoid syndrome – from diagnosis and treatment to news and community updates. We believe this site is a great resource for patients, caregivers, and physicians alike – looking to learn more about carcinoid syndrome. Please visit often and let us know your thoughts as we plan to regularly update the site. Welcome to carcinoidsyndrome.org!

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 this new publication, 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 listing common symptoms and misdiagnoses.  Please share this broadly in hopes of helping others get the proper diagnosis more quickly. Download the infographic here.