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

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

Clinical Trials and Research
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 CAPTEMTrial SummaryThe 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 (OS), and safety. Immune profiling was performed by mass cytometry to evaluate the effect on peripheral blood immune cell subsets."In summary, the combination of temozolomide and nivolumab showed promising activity in NEN, especially in lung…
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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.”

Clinical Trials and Research, Inspiration, Patient Advocacy, Survivorship
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.  Although the story I am attaching says "Neuroendocrine Tumors" throughout, with that prognosis and the treatment he received (chemotherapy and immunotherapy), I'm reasonably confident he had a Neuroendocrine Carcinoma (Colon primary) or a Grade 3 Well Differentiated NET.  Nonetheless, his story is relevant to many people's experiences across the broad spectrum of Neuroendocrine Neoplasms (NENs). And if I am right in my assumption, even with a poorly differentiated type, there is the hope of a better prognosis. Wishing Curtis the very best.  Read his story below.(Please see my disclaimers…
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Treatment for Neuroendocrine Cancer – a summary for patients

Treatment for Neuroendocrine Cancer – a summary for patients

Treatment
ScopeThis 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. This summary will not include complementary or alternative treatment but may cover or overlap with experimental treatment.          Who recommends the best treatment for my condition? Different types of doctors often work together to create a…
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Immunotherapy: Studies with Neuroendocrine Neoplasms

Immunotherapy: Studies with Neuroendocrine Neoplasms

Clinical Trials and Research, Treatment
IntroductionThere's a lot of Immunotherapy stuff out there! However, I also wanted to break it down and perhaps see if I can pick up the what, when, why, where and how in regard to Neuroendocrine Cancer. It's difficult, not least because the picture is not clear and there is no general roadmap printed, let alone one for Neuroendocrine disease. Immunotherapy for NETs was discussed 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 that any success will first be…
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Your Money or Your Life

Your Money or Your Life

Inspiration, Survivorship, Treatment
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 her and her campaign to gain access to new drugs.  I had chatted with Danielle online about some of the story below and I hope I've interpreted it correctly.   RIP…
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