Coming of Age

How do you tell your child she has cancer? Kristi had to quickly figure it out when her daughter, Emily, was diagnosed with neuroendocrine cancer at the age of 8.

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. Watch the complete series here, https://www.carcinoid.org/for-patients/videos/ccf-50th-anniversary-videos/.

The Latest News

March Luncheon with NET Experts in New York City

Join neuroendocrine tumor (NET) patients in New York City on Sunday, March 10, 2019 for a unique opportunity to have lunch with two medical experts. Share your experiences with others who have similar concerns and hear from physicians on issues ranging from NET cancer treatments and surgery to follow-up testing and new developments. This special program was initiated and is sponsored by the Big Apple NETs support group, in collaboration with the Carcinoid Cancer Foundation. There is no charge for the luncheon thanks to the generous sponsorship of Lexicon Pharmaceuticals. READ MORE

Luncheon with the Experts, Drs. Edward Wolin and Celia Divino, March 2019

Edward M. Wolin, MD and Celia M. Divino, MD will be the guest physicians for Luncheon with the Experts on March 10th in New York City.

Help Support CCF!

During our first 50 years, the Carcinoid Cancer Foundation has helped tens of thousands of people diagnosed with neuroendocrine cancer, loved ones, and those seeking a diagnosis. Have we helped you? Here’s a way to give back.Together we can help CCF achieve its mission of education, awareness, support and advocacy. Please donate today! https://carcinoid.kindful.com/

New NCCN Patient Guidelines, Neuroendocrine Tumors

The Carcinoid Cancer Foundation is pleased to share the newly published NCCN (National Comprehensive Cancer Network) Guidelines for Patients® Neuroendocrine Tumors and to have endorsed these guidelines, which focus on tests and treatment options recommended by experts in cancer.  The 100-page publication is accessible in several ways. Read more

Peptide Receptor Radionuclide Therapy, PRRT: Information 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

 

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://www.carcinoid.org/treatment-education/

Below is a short clip from the program featuring NET expert David Metz, MD talking about the signs and symptoms of carcinoid syndrome.

 

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.