Letting Go and Looking Forward
CCF’s 50th anniversary video series continues with “Letting Go and Looking Forward.” Diagnosed with a pancreatic neuroendocrine tumor in 2014, Stacie Chevrier’s first reaction was fear and anxiety. Then she found yoga, where she is strong, present, and in control. “You have to find something to be grateful for every day, because there is always something to be grateful for,” says Stacie. 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. Follow Stacie’s writing at www.staciechevrier.com; as a contributor to CURE magazine, https://www.curetoday.com/community/s… and on Twitter @StacieChevrier.
The Latest News
Patient & Caregiver Education on Carcinoid Syndrome: Talking to Your Doctor About Symptoms, Diet, and Treatment
Last spring, we were pleased to create an interactive resource for people living with Carcinoid Syndromewith our partner CancerCoachLive – we’ve teamed up again to create a new virtual education programthat will provide a detailed walk-through for patients and caregivers that explains how a diagnosis is reached, gives lifestyle tips about what to eat when living with Carcinoid Syndrome, and how to medically manage it over time.
On Wednesday, June 20, from 3:00 pm – 4:00 pm Eastern Standard Time, we’ll be joined by medical experts from the University of Pennsylvania, patient advocate Grace Goldstein of the Carcinoid Cancer Foundation, and a patient who lives with Carcinoid Syndrome. You can send us questions now on the QBoard, and ask more during the live, online event. Click here to read more and register
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
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.
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 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.
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.
