Immunotherapy and Neuroendocrine Neoplasms

Immunotherapy and Neuroendocrine Neoplasms

Updated 24th September 2025. Introduction There's a lot of Immunotherapy stuff out there!  The picture regarding its use in Neuroendocrine Neoplasms is not clear and there is no general roadmap printed.  I first heard of Immunotherapy for NETs following attendance at ENETS 2017 in Barcelona. The presentation that sticks out was one given by Dr Matthew Kulke, a well-known NET Specialist in Boston. My reaction to the presentation was one of 'expectation management' and caution i.e. it's too soon to know if we will get any success and when we will get it. He also hinted that it's more likely…
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A Phase II Clinical Trial of Nivolumab and Temozolomide for Neuroendocrine Neoplasms

A Phase II Clinical Trial of Nivolumab and Temozolomide for Neuroendocrine Neoplasms

What is Nivolumab (Opdivo) Nivolumab is a type of cancer treatment drug called an immunotherapy. It is a treatment for a number of different types of cancer. You might have it as part of a clinical trial for other types of cancer. What is Temozolomide (Temodal) Temozolomide is a type of chemotherapy.  It is well known in Neuroendocrine Cancer as the TEM in CAPTEM Trial Summary The purpose of the trial.  Treatment options are sometimes limited in patients with metastatic neuroendocrine neoplasms (NEN). The primary endpoint was response rate (using RECIST 1.1). Secondary endpoints included progression-free survival (PFS), overall survival…
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Curtis Crump: “If I’m going down, it won’t be without a fight.”

Curtis Crump: “If I’m going down, it won’t be without a fight.”

Curtis Crump: Credit MD Anderson Cancer Center Curtis Crump has an amazing story to tell.  Given 6 months to live, he refused to accept that prognosis and looked elsewhere. He found a top hospital that directed him to an established clinical trial of immunotherapy. Curtis has a high grade aggressive type of Neuroendocrine Cancer called Neuroendocrine Carcinoma (with a Colon primary).  The immunotherapy has some effect to the point that he was able to have surgery, a treatment option not always available to poorly differentiated Neuroendocrine Carciomas. His story is relevant to many people's experiences across the broad spectrum of…
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Treatment for Neuroendocrine Cancer – a summary for patients

Treatment for Neuroendocrine Cancer – a summary for patients

  1. Scope This summary provides an overview of the types of therapy known for treating Neuroendocrine Cancer. They will have been approved at least by one national or regional approval agency, may not be available or approved in your own country; and may appear in clinical guidelines for the treatment of Neuroendocrine Cancer. Clinical trials will not be covered, although it's noted that some of the approved treatments listed may be in follow on trials either to prove new coverage or used in combination with another drug.  For a list of clinical trials covered by the author, click here.…
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Your Money or Your Life

Your Money or Your Life

As I have a 2 year old post about Danielle, I wanted to preface it with this message. It is with great sadness that I let you know Danielle Tindle passed away at the end of August 2017 after a prolonged battle with Neuroendocrine Carcinoma. She had been fighting cancer in one form or another for 12 years and became passionate in campaigning for more attention for young cancer patients.  I've been following her story for almost 2 years and she has really inspired me.  The title of this article is based on the title of a TV programme about…
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