The ABC's of Carcinoid and Neuroendocrine Tumors

Three of the world’s leading carcinoid and NET cancer specialists – Dr. Richard R.P. Warner, Dr. Edward M. Wolin, and Dr. Eugene A. Woltering  – talk about the advice they offer their patients, the advances they have seen during their careers, and what they anticipate will be available for NET patients in the future. (Click on the words YouTube in the bottom right of the video to see it in a larger size).

The Latest News

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.

NET Specialist David C. Metz, MD Receives Prestigious AGA Recognition Award

Congratulations to Dr. David C. Metz, Co-Director of the Neuroendocrine Tumor Center at Penn Medicine, who has received the American Gastroenterological Association (AGA) Distinguished Clinician Award, Clinical Academic Practice. The AGA cited Dr. Metz for exemplifying “traits of an exceptional physician in an academic setting, supplemented by superior traits as a teacher, mentor, investigator and leader.  He is well-versed in all areas of gastroenterology, which has resulted in him being a respected teach/clinician and a highly sought-after clinician and visiting professor in his areas of expertise (neuroendocrine tumors, peptic disorders, pharmacology and uses of gastric antisecretory durgs, and GI bleeding).  Read more about the AGA awards here:  For more information about Dr. Metz, click here:

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:

Now Available on Demand — Patient Education on Carcinoid Syndrome from Diagnosis to Treatment

Watch now, program recorded live on March 1, 2017! Whether you are a newly diagnosed neuroendocrine cancer patient with carcinoid syndrome or have been living with carcinoid syndrome for years, this interactive program with a neuroendocrine tumor (NET) /carcinoid syndrome specialist, patients, and patient advocates will help empower you to keep moving forward — understanding the diagnosis, informing you about treatment options and resources, and sharing tips for living with the syndrome. Click here to watch the program and click on Event Resources to download the video slides.

Breaking News on Rare Disease Day — FDA Approves New Drug for Carcinoid Syndrome Diarrhea

Today, February 28, 2017, the US Food and Drug Administration (FDA) approved XERMELO™ (telotristat ethyl) 250 mg as a first and only orally administered therapy for the treatment of carcinoid syndrome diarrhea in combination with somatostatin analog (SSA) therapy in adults inadequately controlled by SSA therapy[i]. Read more from Lexicon Pharmaceuticals:

According to Lexicon, “Xermelo will be available by prescription, in a 250mg oral tablet, beginning on or about March 1. In an effort to ensure all appropriate patients have access to fast and affordable treatment, Lexicon has launched LexCares – a comprehensive program designed to guide patients through each step of their treatment journey. Through the LexCares Specialty Pharmacy, patients will have access to financial assistance programs that may reduce or eliminate out-of-pocket costs associated with their Xermelo prescription. For additional information, please visit

New England Journal of Medicine Publishes Article on PRRT Clinical Study for Neuroendocrine Tumors

One of the most prestigious medical journals in the United States, the New England Journal of Medicine, published an article (January 12, 2017 issue) about the results of the NETTER-1 Phase 3 clinical trial results evaluating the efficacy and safety of Lutetium-177-Dotatate for patients with advanced, progressive somatostatin receptor-positive midgut neuroendocrine tumors. Shedding light on PRRT, peptide receptor radionuclide therapy! Click here to read more

Advocating for the Neuroendocrine Tumor Community

Congratulations and with appreciation to Stacie Chevrier who has been appointed a Patient Representative with the U.S. Food and Drug Administration (FDA) to represent the Neuroendocrine Tumor community.  Stacie writes that she will “be involved in the official government process of evaluating new drugs and treatments intended to help those affected by Neuroendocrine Tumors.”  Read more and learn about the Patient Representative Network

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.