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

Rare Neuroendocrine Skin Cancer Treated by Immunotherapy

Merkel cell carcinoma, a rare neuroendocrine virus-linked skin cancer, has been added to the list of cancers that can be treated by immunotherapy. Scientists who led the clinical study of the immunotherapy drug pembrolizumab presented their results at the American Association for Cancer Research (AACR) Annual Meeting in New Orleans last week.  Twenty-five Merkel cell carcinoma patients who had not received any systemic therapies for advanced disease were enrolled in the study. Half of these patients “experienced substantial tumor shrinkage lasting nearly three times as long, on average, than with conventional chemotherapy.” Read more here: (this article has links to other articles about immunotherapy)

Immunotherapy cells

Sean Parker Donates $250 Million to Eradicating Cancer

Through the newly established Parker Institute for Cancer Immunotherapy, Sean Parker, co-founder of the file-sharing service Napster and the first president of Facebook, hopes to lead the way in the U.S. moonshot to eradicating cancer.  The Institute will “bring together six of the country’s leading cancer centers to have them share intellectual property, enabling more than 300 researchers at more than 40 labs across the country to have immediate access to each other’s findings.” Although the cancers the researchers will be working on have not yet been identified, each of the six cancer centers involved has NET specialists! The centers are: Memorial Sloan Kettering Cancer Center in New York City, Stanford Medicine in California, the University of Texas MD Anderson Cancer Center, the University of Pennsylvania, and the University of California campuses in Los Angeles and San Francisco. Read more about the cancer immunotherapy initiative: and


Cancer Knows No Age Limit: Young Adults and Their Challenges

Meet Army Captain Joshua Minton who was diagnosed with metastatic neuroendocrine cancer at the age of 27.  Read more about the additional challenges young adults face when dealing with a cancer diagnosis:


PRRT Therapy and Neuroendocrine TumorsOncLive TV, PRRT, Dr. Eric Liu, Dr. Matthew Kulke, Dr. James Yao

Learn more about peptide receptor radionuclide therapy (PRRT) in this newly released OncLive video. NET specialist Dr. Eric H. Liu describes the therapy, how to determine if patients have somatostatin receptors needed for PRRT, and talks about the findings of Advanced Accelerator Application’s NETTER-1 clinical trial. Watch the video here:  The eight previous episodes in this OncLive series on Neuroendocrine Tumors can be accessed on the right-hand column of the OncLive page.


New Article on Somatostatin Analogues by NET Specialist Dr. Matthew Kulke

Somatostatin analogues decrease hormone secretion, improve symptoms, and slow tumor growth in neuroendocrine tumors. Read more in the free, full-text article by Dr. Matthew H. Kulke, Director of the Program in Neuroendocrine and Carcinoid Tumors at Dana-Farber Cancer Institute and an associate professor of medicine at Harvard Medical School. Dr. Kulke serves as Chair of the NCCN Neuroendocrine Tumors Guidelines Panel:


Upcoming NET Conferences in June

The Neuroendocrine Cancer Awareness Network along with the Healing NET Foundation and U.S. Oncology are sponsoring a Lung Carcinoid Conference in Denver, Colorado on Saturday, June 11, 2016.  The conference will be held at the Denver Marriott City Center.  Registration is $25.00 per person and includes breakfast, lunch, and snacks.  Space is limited.  Click here for the conference program and to register:

Los Angeles NETs Conference, Flyer_SaveTheDate_20160415

Registration is open for the 2016 Los Angeles NET Patient & Caregiver Education Conference, hosted by Cedars-Sinai in collaboration with LACNETS and NETRF, to be held on Saturday, June 25, 2016 at Cedars-Sinai.  Click here to see a preliminary list of conference speakers:  Click here for more information and to register:


Ipsen Increases Maximum Benefit in Copay Program for Somatuline Depot

Sharing good news for US patients who are on lanreotide. Ipsen has upgraded the Somatuline Depot Copay program (Ipsen Cares) maximum annual benefit from $12,000 to $20,000 for patients who qualify. For more information, click here:


Dr. Alberto de Hoyos Joins Thoracic Oncology Team at Markey Cancer CenterAlberto De_Hoyos, MD

Cardiothoracic surgeon Dr. Alberto de Hoyos has joined the thoracic oncology team at the Markey Cancer Center, University of Kentucky.  His clinical interests include the treatment of neuroendocrine tumors and mediastienal tumors, lung and esophageal cancers, with specialties including minimally invasive and robotic surgery.  Read more:


Sorafenib a Possible Option for Medullary Thyroid Carcinoma?

Dr. Manisha Shah

Dr. Manisha Shah

Medullary thyroid carcinoma is a rare neuroendocrine cancer diagnosed in about 3,000 US patients annually.  A small study was initiated by Brazilian researchers to see whether sorafenib is an alternative when the two agents approved for this cancer, vandetanib (Calpresa, AstraZeneca) and cabozantinib (Cometriq, Exelixis), are not available. Read more about the study:  In this 2015 interview with Dr. Manisha Shah, who directs the Neuroendocrine Tumor Clinic at Ohio State University Comprehensive Cancer Clinic – The James, she discusses the genetic risk factors of medullary thyroid carcinoma; the current FDA-approved tyrosine kinase inhibitors (TKIs) to treat advanced-stage, metastatic disease; and the advantages of dealing with a molecularly well-characterized malignancy:




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