“I make different decisions now,” says Giovanna, 13 years after being diagnosed with neuroendocrine cancer. Her world crumbled after her diagnosis until she realized how she could use her music to heal — both herself and others. In honor of #RareDiseaseDay 2019, February 28, here is the final episode in CCF’s 50th Anniversary Video Series.
This series has been made possible by the generous support of Lexicon Pharmaceuticals as part of the Fit-to-Fight series. Watch the complete series here, https://www.carcinoid.org/for-patients/videos/ccf-50th-anniversary-videos/.
The Latest News
Carcinoid Heart Disease Expert Jerome S. Zacks, MD to Be Featured on Facebook Live, May 17
On Friday, May 17 at 2 pm EST, CCF will present a special FACEBOOK LIVE event with cardiologist Dr. Jerome Zacks, who specializes in carcinoid heart disease. Submit your questions and watch the presentation here.
CCF Launches New Website for PRRT and Gallium-68 PET/CT Scan
CCF is excited to announce that we have launched a new website dedicated to providing information about PRRT and the Gallium-68 PET/CT scan. This site also includes an interactive map to locate facilities where PRRT and/or the Gallium-68 PET/CT scan are being offered. The map will be updated regularly as additional facilities provide these services. Visit CCF’s new website at https://www.prrtgalliumcenters.org/.
Carcinoid Syndrome Web Series
Likely Suspects: How Hormones May Lead to Carcinoid Syndrome is the newest webcast in the Carcinoid Syndrome Web Series, education for patients presented by Lexicon Pharmaceuticals. Michael Morse, MD from Duke University Medical Center and Ronny Allan, NET patient advocate, break down the science of hormones made by neuroendocrine tumors (NETs). Excess serotonin, one the most common hormones released by NETs, may have a serious impact on your health. Learn more from this free webcast, which you can watch at your convenience. Read more about the series and register to watch the webcasts.
Facebook Live with NET Expert Richard R.P. Warner, MD
On Friday, April 19 CCF presented a special FACEBOOK LIVE event with NET specialist Dr. Richard Warner on Carcinoid Syndrome and Serotonin. Watch the presentation here and stay tuned for the next event in our FACEBOOK LIVE series.
Promising Developments in the Pipeline for High Grade Neuroendocrine Tumor Diagnosis and Treatment
“Treatment for high grade neuroendocrine neoplasms (abnormal tissue growth) is moving the way that the treatment for triple negative breast cancer is moving — toward the realization that there are a basket of subtypes and that each can be potentially treated differently,” according to Aman Chauhan, MD, medical oncologist, Director of NET Theranostics, Markey Cancer Center (NCI Designated Cancer Center), University of Kentucky. Insights gained through clinical trials will change how these cancers are diagnosed and treated. Read more
Help Support CCF!
During our first 50 years, the Carcinoid Cancer Foundation has helped tens of thousands of people diagnosed with neuroendocrine cancer, loved ones, and those seeking a diagnosis. Have we helped you? Here’s a way to give back.Together we can help CCF achieve its mission of education, awareness, support and advocacy. Please donate today! https://carcinoid.kindful.com/
New NCCN Patient Guidelines, Neuroendocrine Tumors
The Carcinoid Cancer Foundation is pleased to share the newly published NCCN (National Comprehensive Cancer Network) Guidelines for Patients® Neuroendocrine Tumors and to have endorsed these guidelines, which focus on tests and treatment options recommended by experts in cancer. The 100-page publication is accessible in several ways. Read more
Peptide Receptor Radionuclide Therapy, PRRT: Information and Locations
Since we shared the news of the FDA’s January 26, 2018 approval of peptide receptor radionuclide therapy, PRRT, with Lutathera (lutetium Lu 177 dotatate), more information has become available for the neuroendocrine tumor community, including updates about coverage and reimbursement; information about patient assistance programs being offered by Advanced Accelerator Applications (AAA), the manufacturer of Lutathera; new patient materials from Advanced Accelerator Applications; and locations where the treatment is currently being offered. Read more
Patient & Caregiver Education on Carcinoid Syndrome: Talking to Your Doctor About Symptoms, Diet, and Treatment
Join us for a new educational program designed for people living with Carcinoid Syndrome and their loved ones. This program provides information about:
- how a diagnosis is reached
- what to eat when living with Carcinoid Syndrome
- how to manage it over time
Check out this free program at your convenience: https://www.carcinoid.org/treatment-education/
Below is a short clip from the program featuring NET expert David Metz, MD talking about the signs and symptoms of carcinoid syndrome.
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 based on feedback from the NET community.
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 has launched a website, www.carcinoidsyndrome.org that 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. 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.