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

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.

Neuroendocrine Tumors on TV: Rare Disease Day Special, February 28, 2017

NETs on TV!  The Carcinoid Cancer Foundation teamed up with The Balancing Act and Advanced Accelerator Applications to raise awareness about carcinoid and neuroendocrine tumors (NETs) during a feature on Lifetime TV on February 28 (Rare Disease Day) and March 8. Watch the feature here

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, has just 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.

FDA Approves New Diagnostic Imaging Agent to Detect Rare Neuroendocrine Tumors

Breaking news on June 1, 2016 from the U.S. Food and Drug Administration! The FDA has approved NETSPOT, “the first kit for the preparation of gallium Ga 68 dotatate injection, a radioactive diagnostic agent for positron emission tomography (PET) imaging.”   Read more from the FDA and Read more from Advanced Acclerator Applications

One Step Closer in the US to Peptide Receptor Radionuclide Therapy, PRRT, for Neuroendocrine Cancers

The clock is ticking!! With Advanced Accelerator Applications’ completed New Drug Application (NDA) submission of Lutathera to the U.S. Food and Drug Administration during the week of April 25, 2016, a decision from the FDA is expected in early 2017.  Additionally, an Expanded Access Program (EAP) in the United States for the investigational product, Lutathera, has begun at a few institutions across the country. Read more