Laughter Is the Best Medicine

CCF’s 50th anniversary video series continues with “Laughter Is the Best Medicine.”  Steve Mazan has known since he was a kid that he wanted to make people laugh. A diagnosis of neuroendocrine cancer in 2005 made this stand-up comedian and inspirational speaker more determined than ever to realize his dream of being on the David Letterman show. He was told he had 5 years to live; 13 years later he’s a nationwide performer, an Emmy Award winning television writer, an author, and a TED speaker. “It doesn’t matter how much time you have,” says Steve, “it’s what you do with it.” This video is made possible by the generous support of Lexicon Pharmaceuticals as part of the Fit-to-Fight series.

at you do with it.” This video is made possible by the generous support of Lexicon Pharmaceuticals as part of the Fit-to-Fight series.

The Latest News

Peptide Receptor Radionuclide Therapy, PRRT:  Updates and Locations

Since we shared the news of the FDA’s January 26, 2018 approval of peptide receptor radionuclide therapy, PRRT, with Lutathera  (lutetium Lu 177 dotatate), more information has become available for the neuroendocrine tumor community, including updates about coverage and reimbursement; information about patient assistance programs being offered by Advanced Accelerator Applications (AAA), the manufacturer of Lutathera; new patient materials from  Advanced Accelerator Applications; and locations where the treatment is currently being offered. Read more

PRRT Infographic_2

October Luncheon with the Experts in White Plains, NY for the NET Community

Reserve your spot today for the free Luncheon with the Experts on Sunday, October 14 in White Plains, NY. The experts are Dr. Edward Wolin, medical oncologist and Director of the Center for Carcinoid and Neuroendocrine Tumors at The Mount Sinai Hospital; surgical oncologist Dr. Michail Shafir; and cardiologist Dr. Jerome Zacks. Read more 

Patient & Caregiver Education on Carcinoid Syndrome: Talking to Your Doctor About Symptoms, Diet, and Treatment

Join us for a new educational program designed for people living with Carcinoid Syndrome and their loved ones. This program provides information about:

  • how a diagnosis is reached
  • what to eat when living with Carcinoid Syndrome
  • how to  manage it over time

Check out this free program at your convenience: https://bit.ly/2uCKSOw

 

Cancer Coach Live, Carcinoid Syndrome program, on-demand

A Journey of Hope: Moving Toward a Brighter Future in Neuroendocrine Tumor (NET) Treatment

A newly-released, must-read about five neuroendocrine tumor patients, each with different experiences with Peptide Receptor Radionuclide Therapy (PRRT).  With a foreword, “Hope is Like Air,” by  neuroendocrine cancer specialist Eric Liu, MD, general surgeon, Rocky Mountain Cancer Centers, Denver, Colorado. Special thanks to Advanced Accelerator Applications, a Novartis company, for this publication. Read more

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.

Clinical Nurse Educator Program Established for Neuroendocrine Tumor Patients on Xermelo

Are you a neuroendocrine tumor patient who is taking or has been prescribed Xermelo? Lexicon Pharmaceuticals is now offering a new Clinical Nurse Educator Program (CNE) available to you at no charge. Click here to read more

CCF Infographic: 6 Questions to Ask Your Doctor

Have you or someone you love been diagnosed with a neuroendocrine tumor or carcinoid cancer?  It can feel like a daunting task to figure out next steps and doctor appointments may be overwhelming.   You can help yourself or support a loved-one by learning about the disease and preparing yourself for doctor visits.  The first visit may be the most challenging, so It’s important to arm yourself with relevant questions.  Here we provide you with six questions, specific to neuroendocrine tumors, to ask your doctor.   Click here to download the infographic.

Carcinoid Syndrome Website

The Carcinoid Cancer Foundation has launched a website, www.carcinoidsyndrome.org that is a space for everything about carcinoid syndrome – from diagnosis and treatment to news and community updates. This site is a great resource for patients, caregivers, and physicians alike – looking to learn more about carcinoid syndrome. Please visit often and let us know your thoughts as we plan to regularly update the site. Welcome to carcinoidsyndrome.org!

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.

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.