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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.

10/29 CFCF Launches Major Immunotherapy Initiative

After a year of reviewing the research, consulting with experts, and engaging leading immunotherapy centers, the Caring for Carcinoid Foundation (CFCF) is thrilled to announce the launch of a major immunotherapy initiative. A treatment that uses the body’s own immune system to fight cancer, immunotherapy has led to dramatic results for some patients with other forms of cancer. We are eager to test the potential of immune-based therapy to provide similar breakthroughs for patients with neuroendocrine cancers.

The Caring for Carcinoid Foundation’s strategy brings leading experts - who have been involved in immunotherapy breakthroughs for other forms of cancer - to the cause of developing better treatments and cures for neuroendocrine cancers. It also includes a clinical trial for two major forms of neuroendocrine tumors (NETs): pancreatic and gastrointestinal (carcinoid) NETs.

10/28 US results from first global survey of neuroendocrine tumor (NET) patients reveal profound impact of this rare cancer on quality of life
  • Results show 94% of patients made lifestyle modifications as a result of their NET, including changes to diet, work, physical activities and social life1
  • Among those currently working nearly two-thirds had to take days off due to their NET, and among those not working 79% had to stop due to their NET1
  • Survey is a collaboration between Novartis and International Neuroendocrine Cancer Alliance; first data from largest US NET patient survey released for NET Cancer Day

East Hanover, N.J., November 3, 2014 Novartis together with the Carcinoid Cancer Foundation and the Caring for Carcinoid Foundation, member organizations of the International Neuroendocrine Cancer Alliance (INCA), today announced US results from the first global survey of patients with neuroendocrine tumors (NETs), a rare type of cancer1.

10/24 UPenn Patient Education Conference

Focus on Neuroendocrine Tumors: Patient & Caregiver Conference

Location:
Hilton Hotel
4200 City Avenue
Philadelphia, PA

Description:
Gain knowledge and take action by getting important information from our expert faculty. Receive hope and support by networking with others. This free patient education conference is being presented jointly by Penn's Abramson Cancer Center and the Caring for Carcinoid Foundation.

Conference Co-Chairs:
David Metz, MD - Gastroenterology Division
Debbie Cohen, MD - Renal, Electrolyte and Hypertension Division
Ronald Holander - Executive Director, Caring for Carcinoid Foundation

Click here to view the agenda.

Register now!

07/18 New Article Suggests Effectiveness of Drug for Prolonged Progression-Free Survival

An article published in New England Journal of Medicine suggests the effectiveness of Somatuline(R) Depot (R) (lanreotide) in prolonged “progression-free survival” for more than 65 percent of patients who took it in a late-stage clinical trial, conducted at 48 sites in 14 countries.

06/10 Agenda Now Available for 2014 LA Patient Education Conference

The agenda is now available for CFCF's 2014 LA Patient Education Program. 

To view the agenda, click here. 

To register for the event, click here

05/06 2014 Los Angeles Patient Education Event

The Caring for Carcinoid Foundation (CFCF) is dedicated to empowering patients and equipping them with a comprehensive understanding of treatment options so they can make the best informed decisions when deciding their care. In this spirit, CFCF is pleased to bring together our extensive community of patients, loved ones, medical professionals, and supporters for the 6th Annual Los Angeles Patient Seminar on Saturday, June 21, 2014.

Please join us for this half day conference to learn more about the latest in neuroendocrine cancer diagnosis and treatment. Expert speakers will give brief lectures and then answer questions from patients and caregivers in a moderated discussion.

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