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.

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.

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.

Interested in Carcinoid/Neuroendocrine Tumor Research?

The Carcinoid Cancer Foundation and our partner Self Care Catalysts are currently recruiting patients with carcinoid and other neuroendocrine tumors (NETs) for a research study which involves the use of the Carcinoid NETs Health Storylines mobile app to track your day-to-day disease experience. Read more and sign up today

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: http://www.lexpharma.com/

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 www.xermelo.com/lexcares.

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

Recent Progress in Neuroendocrine Tumor Management

Has there been significant recent progress in the management of Neuroendocrine Tumors? NET specialist Jonathan R. Strosberg, MD of the H. Lee Moffitt Cancer Center in Tampa, Florida, says “unequivocally yes.” OncLive interviews Dr. Strosberg on the progress in the treatment landscape.  Read more

NETSPOT Gallium-68 Code for Medicare/Medicaid and Private Payors

Another exciting step forward for the NET community! Advanced Accelerator Applications announced  that the Centers for Medicare & Medicaid Services (CMS) has granted NETSPOT® Transitional Pass-Through Status under an “A-code” (A9587) for drug reimbursement, effective January 1, 2017. What this means is that the different institutions doing the Gallium-68 scan utilizing NETSPOT® now have a reimbursement code to submit to Medicare/Medicaid and private payors. While it does not guarantee that individual patients will get insurance coverage, this is a very positive step for getting more institutions to offer the Gallium-68 scan. To read the Advanced Accelerator Applications press release, click here: http://bit.ly/2hf8Sjr.

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.