Recent News on

Join Our Twitter Chat on NET Cancer Day

October 30, 2015

The Carcinoid Cancer Foundation is hosting "Conquering NETs/Carcinoid Cancer Misdiagnoses" Twitter Chat with Steven K. Libutti, MD on November 10, 2015, Worldwide NET Cancer Awareness Day, to help bring attention to NETs/carcinoid cancer. Read more


Webinar: Peptide Receptor Radiotherapy for Neuroendocrine Tumors

October 8, 2015

Learn more about Peptide Receptor Radionuclide Therapy (PRRT), how it works, where it is being used, and who is eligible for this treatment. Register for the free webinar on October 20 at noon, Eastern Time.  Read more  

"The Waiting Room," a Lung Carcinoid Survivor's Story

September 26, 2015

“We are survivors here, in the waiting room.” Lisa Pawlak, a lung carcinoid survivor, shares her inspiring story in the September/October 2015 issue of Coping with Cancer Magazine.  Read Lisa's article here.

Smart Patients Carcinoid and Neuroendocrine Tumor Community

September 4, 2015

The Carcinoid Cancer Foundation is excited to announce a new online community for carcinoid and neuroendocrine tumor (NET) patients, their families and friends. We are partnering with Smart Patients to build this community and hope that combining CCF's experience educating patients about carcinoid and NET cancers with Smart Patients’ experience with online peer support will result in more patients getting information they need even faster. Join Smart Patients, ask a question, and support others who can learn from you: more

Luncheon with the Experts in NYC for Carcinoid and Neuroendocrine Tumor Patients

August 16, 2015

Carcinoid and neuroendocrine tumor (NET) patients are invited to join three medical experts for Lunch with the Experts in New York City on Sunday, September 27, 2015. There is no charge for the luncheon thanks to the generous sponsorship of Lexicon Pharmaceuticals.  Read more

Help Us to Help You

August 13, 2015

The Carcinoid Cancer Foundation is always looking at ways of improving content and services available to people living with carcinoid cancer and other neuroendocrine tumors and we are working with a pharmaceutical partner, Ipsen, to better understand what resources, information, and support you would like to see made available at each stage of your journey. Read more

Lexicon’s Carcinoid Syndrome Treatment Meets Primary Endpoint in Phase III Clinical Trial

August 5, 2015

Lexicon Pharmaceuticals Inc. has announced that the pivotal phase III clinical trial, TELESTAR, of its oral drug candidate telotristat etiprate met the primary endpoint in treating cancer patients with carcinoid syndrome that is not adequately controlled by the current standard of care. Read more

Educational Program on Neuroendocrine Tumors for Oncology Nurses

August 2, 2015

“Emerging Therapies for Neuroendocrine Tumors: New Perspectives for Oncology Nurses,” is an educational program jointly provided by the Postgraduate Institute for Medicine and the Center of Excellence Media, LLC. The program, offered through June 30, 2016, is directed toward oncology nurses and other cancer care professionals who are involved in the care of patients with neuroendocrine tumors (NETs). Read more

2015 Warner Advocacy Award: Call for Nominations

July 30, 2015

Do you know someone who is a passionate advocate for patients with neuroendocrine tumors (NETs)? Novartis Oncology and The NET Alliance are searching for an outstanding NET patient advocate to recognize and honor with the 6th Annual Warner Advocacy Award. Nominations are being accepted through 5 pm, Eastern Time, on Thursday, August 20, 2015.  Read more

Surviving Carcinoid Cancer for More Than 3 Decades

July 14, 2015

Marilyn Thurston of Colorado may be the longest-surviving carcinoid patient in the United States and possibly the world, having been diagnosed over 30 years ago.  Her physician, Dr. Nicholas DiBella, created a special pin recognizing her tenacity. In 1986, Marilyn participated in the first clinical trial for Sandostatin.

Note: Sadly, Marilyn passed away on November 16, 2015.  Her son, Bob Thurston, shared this news on CCF's Facebook page where he wrote: "My mother, Marilyn Thurston, passed away on Nov 16, 2015 at age 79. But what is amazing is that she died of heart failure, not from anything directly associated with her Carcinoid tumors. In fact, she had no Carcinoid related symptoms the last month of her life. She was determined to win her 35 year battle and she won. We are so proud of the encouragement and inspiration she provided to all those also working to overcome Carcinoid."

Special thanks to Amy Matthew of The Pueblo Chieftain for sharing Marilyn's story of hope and positivity.  Read the article here.