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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

Hilton Hotel
4200 City Avenue
Philadelphia, PA

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!



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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, caregivers, medical professionals, and community members for our 4th Patient Seminar at Stanford University on March 1, 2015.

Please join us for this 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.

Registration and agenda will be available shortly.

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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.