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

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

NETs on TV!  The Carcinoid Cancer Foundation has teamed up with The Balancing Act to raise awareness about carcinoid and neuroendocrine tumors (NETs) during a feature on Lifetime TV on February 28 (Rare Disease Day) and March 8. Read more and watch a preview

Special Live Online Event — Patient Education on Carcinoid Syndrome, March 1, 2017

Cancer Coach Live, in partnership with the Carcinoid Cancer Foundation, is presenting a special patient education live event on Carcinoid Syndrome: From Diagnosis to Treatment on Wednesday, March 1 from 11 am to 12 noon EST.  Whether you are a newly diagnosed neuroendocrine cancer patient with carcinoid syndrome or have been living with carcinoid syndrome for years, this live and 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. Read more and register

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

April Luncheon with the Experts in White Plains, NY — Carcinoid and Neuroendocrine Tumor Patients Are Invited!

The Big Apple NETs support group invites you to join fellow carcinoid and neuroendocrine tumor (NET) patients and 3 medical experts for Lunch with the Experts on Sunday, April 2, 2017 at the Westchester Hills Golf Club in White Plains, New York.  This is a unique opportunity to share experiences with other patients and to hear from physicians who specialize in NET treatment, in an informal setting. Read more and make your reservations

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