Love Is Patient

Shock was Dana’s first reaction when she was diagnosed at age 31 with neuroendocrine tumors throughout her body. Her boyfriend couldn’t cope with her diagnosis and Dana found herself alone, her world turned upside down. And then came Brien . . .

This video is part of a series in celebration of the Carcinoid Cancer Foundation’s 50th anniversary in 2018, made possible by the generous support of Lexicon Pharmaceuticals as part of the Fit-to-Fight series.

The Latest News

Late NET Talk 2018 — Chicago, Atlanta, Phoenix

Chicago on September 20, Atlanta on October 18 and Phoenix on November 1 — it’s “Late NET Talk,” a FREE  evening of inspirational stories and connections hosted by stand-up comedian Steve Mazan. You and a guest are invited! Seating is limited. Read more and make your reservations today.

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

How to Get the Most Out of Conversations with Your Doctor — Free Webcast

Join Patient Advocate Josh Mailman and Health Communication Expert Neala Havener for a free webcast on Tuesday, September 25, 2018 beginning at 7:00 pm EST, 6:00 CST, 5:00 pm MST, and 4:00 pm PST.  How to Get the Most Out of Conversations with Your Doctor: Communication Tips for People Living with Carcinoid Syndrome and Neuroendocrine Tumors will help you identify common communication traps and offer tips for better conversations with your doctor. Register today and ask your questions in advance of the webcast: bit.ly/2wt5L0m.  

Click here for the webcast flyer.

October Luncheon with the Experts in White Plains, NY for the NET Community — ONLY A FEW SPOTS LEFT!

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

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 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.