New Video: Lung NETs and DIPNECH

We’re excited to share our newest video on Lung Neuroendocrine Tumors and DIPNECH, featuring NET expert Dr. Robert Ramirez, oncology nurse navigator Pamela Ryan, and NET patient Paige McMurray. What are the symptoms? How are lung NET patients diagnosed, treated, and followed? And what exactly is DIPNECH?

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

Luncheon with the Experts Continues

Pamela Kunz, Jan 14, 2021


Pamela L. Kunz, MD, will be the featured guest for Luncheon with the Experts Facebook Live on Thursday, January 14, 2021 at 12 noon EST.  A medical oncologist, Dr. Kunz is Leader of the Gastrointestinal Cancers Program at Smilow Cancer Hospital at Yale New Haven and Yale Cancer Center and Director of GI Medical Oncology within the Section of Medical Oncology.

Watch on Facebook (there’s no need to register nor is a link needed) or next week on YouTube. READ MORE

Latest News

2020 NANETS Lifetime Achievement Award

Congratulations to neuroendocrine tumor specialist Matthew H.Kulke, MD upon being selected as the 2020 North American Neuroendocrine Tumor Society (NANETS) Lifetime Achievement Award recipient . Dr. Kulke is Chief of Hematology and Medical Oncology and Co-Director of the Boston University/Boston Medical Center Cancer Center. He is also Zoltan Kohn Professor of Medicine at Boston University School of Medicine. Dr. Kulke was formerly Director of the Program in Neuroendocrine and Carcinoid Tumors at Dana-Farber Cancer Institute in Boston. Watch the presentation of the Lifetime Achievement Award to Dr. Kulke here:

NANETS 2020 Lifetime Achievement Award, Dr. Matthew Kulke

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,  For anyone who is not on Facebook, it is available for viewing on CCF’s YouTube channel here,

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

Detectnet Transitional Pass-Through Status Granted by Centers for Medicare and Medicaid Services

RadioMedix Inc. and its commercial partner, Curium, announced today, December 9, 2020, that the Centers for Medicare & Medicaid Services (CMS) “has granted Detectnet Transitional Pass-Through Status (code C9068) effective January 1, 2021. The descriptor for Detectnet will be: Copper Cu-64, dotatate, diagnostic, 1 millicurie. C9068 will be used to bill Detectnet for Medicare patients seen in the hospital outpatient department.” An additional imaging option for the #NeuroendocrineTumor community!…/RadioMedix-Curium…


Next Generation Germanium-68/Gallium-68 Generator

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ITM Isotopen Technologien München AG (ITM), a biotechnology and radiopharmaceutical group of companies in Germany, and RadioMedix Inc., a clinical stage biotechnology company in Houston, Texas, announced  on December 8, 2020, that the U.S. Food and Drug Administration (FDA) has issued the Drug Master File (DMF no. 34938) for ITM’s next generation Germanium-68/Gallium-68 (68Ge/68Ga) Generator, distributed under the brand name GeGant®.The DMF will enable companies interested in developing new drugs for the U.S. market to refer to the DMF and use GeGant® in clinical tests for radiopharmaceuticals and in other settings. This is especially significant for the #NeuroendocrineTumor community. Read more,…/FDA+has…/17693651.html


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


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,

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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.