News and Notes for the Carcinoid and Neuroendocrine Tumor Community, March 2016

Breaking News from Advanced Accelerator Applications (AAA) about PRRT Treatment— Advanced Accelerator Applications announced on March 23 that the company has initiated an expanded access program (EAP) in the United States for the investigational product, Lutathera, which is an emerging form of treatments called Peptide Receptor Radionuclide Therapy or PRRT.  Through this program, Lutathera is being made available to patients who have “inoperable, somatostatin receptor positive, midgut carcinoid tumors, progressive under somatostatin analogue therapy.”  The expanded access program of the U.S. Food and Drug and Administration (FDA) enables patients with serious or life-threatening illness who would not qualify for clinical trials and for whom “there are no comparable or satisfactory alternate therapies” to access investigational therapies. This is also sometimes known as “compassionate use.”  Learn more about the Lutathera EAP here.

NETTER-1 is the clinical trial in which the efficacy and safety of Lutathera, or 177Lu-DOTATATE, compared to high dose (60 mg) Octreotide LAR was studied. The primary objective of the trial was the assessment of Progression-Free Survival (PFS). According to carcinoid/NET specialist Dr. Jonathan Strosberg, “The findings were, in my opinion, extraordinarily impressive, the median progression-free survival improved by nearly 80%, which is fairly unprecedented in oncologic studies. The finding is important because limited therapeutic options exist for such patients, who comprise 20% to 45% of neuroendocrine tumor cases.”

Download the press release and read more here, including information about AAA’s announcement of a New Drug Application (NDA) filing plan for Lutathera that is forthcoming with the FDA and the European Medicine Agency (EMA).


A new OncLive video series on Neuroendocrine Tumors is now online. Matthew H. Kulke, MD, Director of the Program in Neuroendocrine and Carcinoid-Tumors at Dana-Farber/Brigham and Women’s Cancer Center in Massachusetts, is the series Moderator.  Insights are provided by panelists Jennifer Eads, MD, Case Western Reserve University; Diane Reidy Lagunes, MD, Memorial Sloan-Kettering Cancer Center; Eric H. Liu, MD, Rocky Mountain Cancer Center; and James C. Yao, MD, The University of Texas MD Anderson Cancer Center.The episodes that have been released to date are listed below:

Episode 1: Clinical and Biological Distinctions in Neuroendocrine Tumors

Episode 2: Disease Factors Influencing Initial Treatment Approaches in NETs

Episode 3: Determining Surgical Candidacy in NETs

Episode 4: Symptom Management in Functional NETs

Episode 5: Goals of Therapy with Somatostatin Analogs in NETs

Episode 6: The Role of Surgery in the Management of NETs

OncLive, Kulke, Liu, Eads, Yao, Reidy-Lagunes


The 13th Annual ENETS (European Neuroendocrine Tumor Society) Conference took place in Barcelona, Spain from March 9-11, 2016 and was attended by over 1,500 people.  Media coverage included articles about the results of the NETTER-1 clinical study, New lifeline for patients with inoperable neuroendocrine cancers; data presented from the TELESTAR study; Retreatment With Peptide-Receptor Radionuclide Therapy Improves PFS in Patients With NETs;  Temozolomide Shows Anti-Tumor in Advanced Pulmonary Carcinoids, Regardless of Previous Oxaliplatin Therapy; and Telotristat Etiprate Controls GI Symptoms in Patients With Carcinoid Syndrome.

Watch for full text copies of the ENETS 2016 Consensus Guidelines for the Diagnosis and Treatment of Neuroendocrine Tumors later this spring.


Diane Reidy Lagunes, MD, Memorial Sloan Kettering_2

“Finding an Outlet in the Face of Rare Cancers” — carcinoid/neuroendocrine cancer specialist Dr. Diane Reidy Lagunes, medical oncologist at Memorial Sloan Kettering Cancer Center in New York City, explains how her patients inspire her as a physician and why she participates in Cycle for Survival in this feature article in the Huffington Post,



Seeking 2 patients who live in or can travel to Boston, MA to participate in an in-person research study on Monday, April 25 from 9 am to 2 pm on patient’ and physician’ preferences in the management of unresectable, well- or moderately-differentiated nonfunctioning gastroenteropancreatic neuroendocrine tumors (patient participants must meet these criteria). Patients will be paid $600.00 for being part of the study. Physicians will also be participating in the study. If you are interested in participating or have questions, please contact the Carcinoid Cancer Foundation at 888-722-3132, Eastern Time, or by email at for further information. This is a wonderful opportunity to have your voice be heard and to make a difference for the NET community!


Josh Mailman, President of the NorCal CarciNET Community, reports they had a team of 75 participants in the Oakland Running Festival on Sunday, March 20, 2016, running to raise awareness of Neuroendocrine Cancer. What’s absolutely amazing is that on the eve of the Festival two zebras escaped from a local circus that was in town!




Have you registered for the April 15th Penn Medicine and NET Research Foundation’s 5th Focus on Neuroendocrine Tumors Conference which will be held in Philadelphia, Pennsylvania?  There is no charge for attendance and guests are welcome to attend in person or via live streaming from the conference.  Click here for the conference program,  Click here to register,



Stacie Chevrier


Stacie Chevrier “is a recovering type-A, corporate climber who made a big life change after being diagnosed with cancer in September 2014. She now spends her days focusing on writing, fitness and healthy living. Outside of these passions, Stacie can be found practicing yoga, enjoying anything outdoors, traveling and defying the odds as a pancreatic neuroendocrine tumor survivor.” Stacie is a frequent contributor to CURE Magazine on subjects ranging from “Creating My Cancer Posse” to “Lessons Learned in Advocating During Your Cancer Treatment.”



On Saturday, April 9 doctors from the City of Hope in Duarte, California will present a day-long in-person event, How the Experts Treat Neuroendocrine Tumors, for physicians, residents and fellows, and allied healthcare providers. This is a CME (Continuing Medical Education) opportunity.  Members of the LACNETS carcinoid/NETsupport group are invited to attend at no charge.  Click here for a conference program and registration information, Please share this information with medical/healthcare professionals who want to learn more about neuroendocrine cancer.


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