Welcome to the carcinoid syndrome blog

You’re in the right place for articles, news, and information on NETs and carcinoid syndrome.

Updated monthly, this blog is a place to get information on NETs and carcinoid syndrome, from the perspectives of real patients, caregivers, doctors and other health professionals in the community.

Check below to find our latest article, or scroll down to explore articles from previous months

News to Use, News to Share: Free Online CE Activity Helps Providers Optimize Treatment of Carcinoid Syndrome in NETs Patients February 14, 2019

An online Continuing Education (CE) activity, “Optimizing Treatment of Carcinoid Syndrome in Patients with NETs,” is available for health professionals and should also be shared by patients with their providers. The program runs through March 8, 2019. Reflecting the most current knowledge in helping patients manage carcinoid syndrome, this free, 48-minute CE activity is jointly offered by the Postgraduate Institute for Medicine and i3 Health.

Talking to Your Doctor About Carcinoid Syndrome Symptoms, Diet and Treatment November 3, 2018

An Online Video Education Program for Patients and Caregivers

In March 2017 we released our first live educational program in partnership with CancerCoachLive.com, designed for families managing Carcinoid Syndrome. The initial program was such a success that we teamed up to release a second program!

Our second program premiered live on CancerCoachLive.com in June and also streamed live on Facebook. This new program focuses on how a diagnosis is reached, what to eat when everything seems to make symptoms worse, and advice about how to medically manage Carcinoid Syndrome over time.

Free App Gives A Measure of Control Back To Patients Living With NETs and Carcinoid Syndrome May 22, 2018

A free, easy-to-use app, Carcinoid NETs Health Storylines, is empowering patients to be proactive in tracking and staying on top of the many aspects of life with neuroendocrine tumors (NETs) and carcinoid syndrome. Says NETs patient and Self Care Ambassador Beth Leonard, the app “allows me to feel I have some semblance of control in a disease that’s not in my control.”

New Clinical Nurse Educator Program for Patients on Xermelo March 13, 2018

If you are a neuroendocrine tumor patient who is taking or has been prescribed Xermelo, Lexicon Pharmaceuticals is offering a new Clinical Nurse Educator Program (CNE) available to you at no charge.

New Guidelines Will Help Diagnose and Treat Carcinoid Heart Disease February 15, 2018

Neuroendocrine cancer patients and their doctors now have new and important tools for diagnosing and treating carcinoid heart disease (CHD) early. Last year, an international multidisciplinary team comprised of specialists on the leading edge of research and treatment for neuroendocrine cancer published guidelines in the Journal of the American College of Cardiology entitled, “Diagnosing and Managing Carcinoid Heart Disease in Patients with Neuroendocrine Tumors: An Expert Statement.” Given that up to 50 percent of neuroendocrine cancer (carcinoid) patients go on to develop CHD, which is often more life-threatening for the patient than the usually slow-growing neuroendocrine tumors, this is a huge step towards the goal of educating patients and doctors about the current gold standard in diagnosis and treatment.