How to Stay Positive with Cancer

Beth asked the doctor to remove her appendix while having surgery on her gallbladder. She had a feeling something bigger was going on . . . she was right.

 Watch all of CCF’s 2020-21 Video Series here: https://www.carcinoid.org/for-patients/videos/ccf-2020-video-series/.

Luncheon with the Experts continues

Andrew E. Hendifar, MD, hematologist/oncologist at Cedars Sinai in Los Angeles, California, will be the featured guest for Facebook Live Luncheon with the Experts on Thursday, August 5 from 12 noon to 1 pm, Eastern Time. Dr. Hendifar is Cedar Sinai’s Medical Director, Pancreatic Cancer; leads the Gastrointestinal Disease Research Group; and is the founding Director of the Hematology and Oncology Fellowship Program, among other leadership positions. READ MORE

Andrew Hendifar, August 5, 2021

Latest News

New Survey for the NET Community

You can help advance research in the neuroendocrine tumor community by participating in an international survey being conducted by a pharmaceutical company in the United States, United Kingdom, Ireland, and Canada. The goal of the study is to better understand the experience of somatostatin analog injections, particularly pain at the injection site and its impact on daily life. READ MORE and TAKE THE SURVEY

SNMMI NET Patient Education Day – August 14, 2021

Registration is now open for the SNMMI, Society of Nuclear Medicine & Molecular Imaging, Annual Patient Education Day program. The 2021 event will feature three virtual, online, live webinars offering patients, caregivers, and advocates a unique opportunity to learn about the role of nuclear medicine in diagnosing and treating disease (NETs, prostate cancer, breast cancer). The Neuroendocrine Tumors (NETs) program is scheduled for Saturday, August 14 from 12:00 to 2:00 pm, Eastern Time. CLICK HERE for more information and to register, https://bit.ly/SNMMI_PatientEducationDayNETs.

New Drug Application Accepted by FDA

The U.S. Food and Drug Administration, FDA, has accepted the filing of the new drug application (NDA) for surufatinib as a potential therapeutic option for patients with pancreatic and extra-pancreatic neuroendocrine tumors (NETs).  READ MORE

Breaking News_3

Neuroendocrine Tumor Information in 10 LanguagesINCA NET Information in Many Lanuagues (002)

Did you know that the International Neuroendocrine Tumor Alliance (INCA), has free, NET info packets in 10 languages? Click here to select your language and download the factsheets: https://incalliance.org/net-info-packs/. The Carcinoid Cancer Foundation is proud to be a founding member of INCA.

NANETS Issues Position Statement on COVID-19 Vaccination for NET and NEC Patients

A growing body of evidence suggests that patients with cancer have an increased risk of severe COVID-19 infection and related complications.  NANETS, the North American Neuroendocrine Tumor Society, has issued a Position Statement regarding the plan for COVID-19 vaccination for patients with neuroendocrine neoplasms (NENs), including well differentiated neuroendocrine tumors (NETs) and poorly differentiated neuroendocrine carcinomas (NECs). NEN survivors and patients with NENs on observation or undergoing cancer treatment should be offered COVID-19 vaccination as long as any components of the vaccine are not contraindicated. READ MORE

COVID 19 vaccine

Facebook Live Program on Carcinoid Syndrome: Managing Breakthrough Symptoms

Are you newly diagnosed with carcinoid syndrome or have been living with the syndrome for many years?

The Carcinoid Cancer Foundation presented a Facebook Live program on Carcinoid Syndrome on December 14th featuring neuroendocrine tumor (NET) expert Lowell Anthony, MD, FACP, Chief of the Division of Medical Oncology at the UK Markey Cancer Center in Lexington, Kentucky, and NET patient Melanie Bean. The live program offered viewers the opportunity to ask questions of Dr. Anthony and Ms. Bean and covered living with carcinoid syndrome and how to manage breakthrough symptoms.

If you were not able to join us for the live program, it is now available for viewing on CCF’s Facebook page here, https://www.facebook.com/271774129226/videos/2949405928614542.  For anyone who is not on Facebook, it is available for viewing on CCF’s YouTube channel here, https://youtu.be/xSLCXjYEb1s.

This special program is made possible with sponsorship by Sun Pharmaceuticals Industries Inc.

Carcinoid Syndrome Facebook Live program, Dr. Lowell Anthony and Melanie Bean, Dec 14, 2020

Promising Developments in the Pipeline for High Grade Neuroendocrine Tumor Diagnosis and Treatment

“Treatment for high grade neuroendocrine neoplasms (abnormal tissue growth) is moving the way that the treatment for triple negative breast cancer is moving — toward the realization that there are a basket of subtypes and that each can be potentially treated differently,” according to Aman Chauhan, MD, medical oncologist, Director of NET Theranostics, Markey Cancer Center (NCI Designated Cancer Center), University of Kentucky. Insights gained through clinical trials will change how these cancers are diagnosed and treated.  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.

6 Questions to Ask Your Doctor

Carcinoid Syndrome Website

The Carcinoid Cancer Foundation’s website www.carcinoidsyndrome.org  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.

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 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

Could You Have a Neuroendocrine Tumor Infographic

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 — Could You Have a Neuroendocrine Tumor— listing common symptoms and misdiagnoses.  Please share this broadly in hopes of helping others get the proper diagnosis more quickly. Download the infographic here.