New Video: Clinical Trials

“Clinical trials are critical for neuroendocrine tumor patients,” says Lowell Anthony, MD. “Until this disease is cured we have to be constantly looking at alternative management.” NET experts Dr. Lowell Anthony, Dr. Aman Chauhan, Dr. Shikha Jain, Dr. Pamela Kunz, Dr. Erik Mittra, and Dr. Robert Ramirez discuss the phases of clinical trials, trials that have brought new treatment options for NET patients in recent years, and how patients can benefit from participating in trials.  Neuroendocrine tumor clinical trials are listed at


Watch all of CCF’s 2020 Video Series here:  And stay tuned for more to come!

Luncheon with the Experts Continues

Rodrigo Vianna, MD_4

Rodrigo Vianna, MD, PhD, will be the featured guest for Luncheon with the Experts on Thursday, December 3 at 12 noon Eastern Time. Dr. Vianna  leads the Miami Transplant Institute (MTI), a unique affiliation between Jackson Health System and UHealth – University of Miami Health System, as director of MTI and chief of liver, intestinal, and multivisceral transplant. Dr. Vianna is an accomplished liver transplant surgeon and a pioneer in intestinal and multivisceral transplantation. He is also a professor of clinical surgery at the University of Miami Miller School of Medicine.

To view the program come to CCF’s Facebook page,, at noon Eastern Time.  There is no need to register and there is no special link.

Viewers are welcome to pose questions during the live program.

If you are on Facebook but unable to join at the scheduled time, the presentations will remain permanently on CCF’s Facebook page in the Video section,

And for anyone not on Facebook, each of the presentations in the series will be available on CCF’s YouTube channel To receive notifications of all new videos on our YouTube channel, CLICK SUBSCRIBE and HIT THE BELL to receive notifications each time a new video is uploaded.

Sign up for our e-newsletter to receive notifications about all upcoming Luncheon with the Experts programs, every Thursday from noon to 1 pm ET, as well as lots of additional news of interest to the NET community:

Latest News

Giving Tuesday, December 1

Giving Tuesday 2020_CCF

At the Carcinoid Cancer Foundation we know how important it is to understand a diagnosis, find the right doctor, and learn about treatment options. We know that navigating NETs isn’t always easy. 
We answer over a thousand phone calls and emails from patients every year. We provide the most up-to-date medical information for the community through our websites and our outreach. It’s our mission to educate, support and advocate for people diagnosed with NETs and their loved ones every step of the way.
Please consider a donation today to support our mission on GIVING TUESDAY, a “global generosity movement unleashing the power of people and organizations to transform their communities and the world.” DONATE HERE,

New NET Video in Honor of NET Cancer Awareness Month

To commemorate Neuroendocrine Cancer Awareness Month in November and World #NETCancerDay on November 10, and in recognition of all lives touched by neuroendocrine cancer, Sun Pharma has sponsored the creation of the NET Effects video. The insights, perspectives and experiences shared by NET experts, advocates, patients and caregivers, will inspire you as we join together to raise awareness about NETs. Please share the video which celebrates all committed to NET advocacy, education, research, treatment advances and care – including viewers like you!

Pancreatic Neuroendocrine Tumors Facebook Live Webinar, Now Available for Viewing at Your Convenience

The American Association of Endocrine Surgeon’s November 19th Facebook live, free webinar focusing on Pancreatic Neuroendocrine Tumors with a panel of NET experts is now available for viewing at your convenience. Click here to watch the webinar:

American Association of Endocrine Surgeons, Pancreatic NET program, Nov.19,2020

CURE Extraordinary Healer Award for Oncology Nursing

CURE is now accepting nominations for the 2021 Extraordinary Healer Award for Oncology Nursing, a unique opportunity to honor an extraordinary oncology nurse.  You are invited to describe the compassion, expertise and helpfulness a special nurse has exhibited in caring for patients with cancer.  Essay nominations will be accepted from health care professional colleagues, current or former patients, and caregivers.  Click here to submit your nomination by January 15, 2021.

CURE Extraordinary Healer 2021_2

NEW Survey: Understanding Patient Preferences in NET Treatments (CLOSING SOON!)

When you meet with your healthcare team do you discuss what is important to you as you consider treatment options?  You can help physicians better understand patient-centered treatment decision making by participating in this new, international surveyDIRECT NETs.  Read more and take the survey today

Survey, DIRECT-NETs_2, Sept 2020_border2

TerSera Therapeutics Acquires Xermelo and Continued NET Patient Nursing Support Services

TerSera Therapeutics recently acquired Xermelo (telotristat ethyl) from Lexicon Pharmaceuticals. Xermelo is the first and only FDA-approved prescription medicine, used along with somatostatin analog (SSA), for carcinoid syndrome diarrhea in adults who are inadequately controlled by SSA therapy.  Lexicon’s Clinical Nurse Educator team has transitioned to TerSera Therapeutics.  As such, there will be no disruption in Xermelo nursing support for neuroendocrine tumor patients.  If you would like to speak with a Clinical Nurse Educator, visit to enroll and a nurse will contact you within 48 hours.  Read more 

FDA Approves New NET Diagnostic Imaging Radiopharmaceutical

The U.S. Food and Drug Administration (FDA) has approved Detectnet™, copper Cu 64 dotatate injection. This is a new diagnostic radiopharmaceutical for use with positron emission tomography (PET) for the detection, localization, and monitoring of somatostatin receptor positive NETs. Read more about copper Cu 64,

Breaking News_3

NANETS 2020 Grant Recipients

Exciting news from NANETS, the North American Neuroendocrine Tumor Society, about the 2020 Research Grant Recipients. Congratulations to Dr. Heloisa Soares of the Huntsman Cancer Institute, University of Utah; Dr. Xavier Keutgen of the University of Chicago Medical Center; and Dr. Brendan Finnerty of Weill Cornell Medicine! Read more about the grants and the recipients here,

NANETS 2020 Research Grant Recipients, Drs. Soares, Keutgen, Finnerty

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.

Carcinoid Syndrome Website

The Carcinoid Cancer Foundation’s website  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:

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.