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09/30 Study Shows PRRT Treatment Significantly Increased Progression-Free Survival for Advanced Midgut NETs

The results from the first large scale randomized control trial of Peptide Receptor Radionuclide Therapy (PRRT) were released last week at the European Cancer Congress 2015 meeting in Vienna, Austria. The data from the international NETTER-1 trial demonstrated increased progression free survival compared to high dose octreotide LAR for patients with advanced midgut neuroendocrine tumors. While available in many parts of the world, PRRT has not yet been approved for use in the US or other countries pending prospective randomized clinical trials (RCT). Having a positive RCT for PRRT should greatly expand access and availability to PRRT around the world. Click here to download the full release.

01/26 Research Indicates mTOR Inhibitor May Halt or Shrink Tumor Growth

Investigator: Eric Nakakura, MD, PhD
Grant: 2012 Caring for Carcinoid Foundation - AACR Grant for Carcinoid Tumor and Pancreatic 
Neuroendocrine Tumor Research
Institution: University of California, San Francisco
Project Title: Overcoming Resistance to mTOR Inhibition in Pancreatic Neuroendocrine Tumors

The mTOR inhibitor, everolimus was recently approved for patients with pancreatic 
neuroendocrine tumors. Over time, however many patients develop resistance to treatment with this therapy. Dr. Nakakura's project sought to understand how resistance to everolimus develops in patients with neuroendocrine tumors and discover novel methods to overcome this resistance.

01/06 Neuroendocrine Cancer and Stuart Scott’s Battle with a Rare Appendiceal Cancer

Popular ESPN anchor and commentator Stuart Scott was a courageous, inspirational person who died last Sunday after a long battle with a rare form of appendiceal cancer. For seven years, Mr. Scott lived a full and active life inspiring others with his example and with his stirring words when he received the Jimmy V Award for Perseverance at last year’s ESPYs.

Mr. Scott was private about the details of the particular type of appendiceal cancer he had and most media stories about his battle have respected that privacy over the past few years. There have, however, been some recent reports and social media posts that have alluded to “carcinoid” in talking about his disease, leading to speculation that he suffered from neuroendocrine tumors (NETs).

After consulting with some of our leading experts about NETs and appendiceal cancer, it is easy to see where some of the confusion and speculation can arise:

  1. While appendiceal carcinoids, a type of neuroendocrine tumor, are a common form of appendiceal cancer, there are other even more rare and very aggressive forms.
  2. Goblet cell carcinoids, also known as adenocarcinoid or mixed adeno-neuroendocrine carcinoma (MANEC), also often arise in the appendix. Although the word “carcinoid” appears in this type of appendiceal cancer, they are not carcinoids or neuroendocrine tumors, which leads to further confusion.
  3. There is a huge difference between appendiceal carcinoid and goblet cell carcinoid of the appendix. The latter tend to behave aggressively and more like an adenocarcinoma and are treated as such.

We may never know what ultimately took Stuart Scott’s life, but we can cherish his memory and contributions to furthering the understanding of rare cancers and inspiring those living with rare cancers.

12/17 Lanreotide Approved for Treatment of Patients with Neuroendocrine Tumors

The U.S. Food and Drug Administration (FDA) has granted approval to Ipsen Pharma for lanreotide (Somatuline Depot Injection) for the treatment of patients with unresectable, well or moderately differentiated, locally advanced or metastatic gastroenteropancreatic neuroendocrine tumors.

The approval was based on a double-blind, randomized, placebo-controlled phase III trial with progression free survival as the primary endpoint. The most commonly (greater than or equal to 10%) reported adverse reactions in lanreotide-treated patients were abdominal pain, musculoskeletal pain, vomiting, headache, injection site reaction, hyperglycemia, hypertension, and cholelithiasis.



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Join Josh Mailman, Edward Wolin, MD and Erik Mittra, MD, PhD for an informative webinar on PeptideReceptor Radiotherapy for Neuroendocrine Tumors.Learn what PRRT is, how it works, where it is being used, and who is eligible to receive it.

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From Erin Jacobson:

In 2014, my mom Sandy was diagnosed with Stage IV, metastatic, neuroendocrine cancer.  

Although my mom knew the prognosis was poor, she faced her time with cancer in the bravest, most positive, and graceful way. She faced treatments, multiple surgeries, procedures, and hundreds of needle sticks with strength and without complaint. Through it all, she was determined to do whatever she could to get better.

My mom refused to let cancer get her down and she did her best every day to continue with her life as normally as possible. She was almost always in a good mood and served as an inspiration to others.  

Neuroendocrine cancer took her body in 2015. My mom wanted others to be helped so that they didn't have to suffer with cancer. My mom was so selfless, always looking out for others. It would be a wonderful gift to her that someone else can be helped in her name.

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The passing of Steve Jobs is a powerful reminder of the need for funding for research to find a cure for Pancreatic Neuroendocrine and other neuroendocrine cancers.