Raising awareness of neuroendocrine cancers around the world

NET Cancer Day

November 10

August 3

Carpa Organizes Meetings Focusing on NET Patients

Carpa, the Swedish NET patient organization, has organized two special meetings that will be held in conjunction with the European Multidisciplinary Cancer Congress in Stockholm this September. Read rest of article.

August 3

Afinitor and Pancreatic NET Patients in the EU

Pancreatic NET patients in the EU with unresectable or metastatic tumors may soon have the first mTOR inhibitor drug to be approved for pNET patients. The Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency has backed Novartis’ Afinitor. The European Commission is expected to follow the CHMP recommendation and will deliver its final decision within the next three months.

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July 1

New Pancreatic Neuroendocrine Tumor Website

Pfizer Oncology, in partnership with the Pancreatic Cancer Action Network, has created a new website dedicated to helping foster stronger connections throughout the pancreatic NET (neuroendocrine tumor) community and to raising awareness through education and information.  The site includes excellent videos of patients and caregivers talking about their experience with pancreatic NETs.  Visit the site at:  http://www.pannetconnections.com.

June 30

European NET Nurse Forum Goes Live

The NET Patient Foundation has announced the launch of the European NET Nurse Forum, which went live on June 29, 2011.

The NET Nurse Forum Europe has been developed to improve the communication between specialist and nonspecialist nurses working with NET patients. Across Europe there is a wealth of expertise and energy among nurses and this forum provides a tool for sharing, supporting and guiding each other, for the ultimate benefit of NET patients.

Nurses who are interested in joining the forum should contact Catherine Bouvier, Director of the NET Patient Foundation:  catherinebouvier@btinternet.com.

June 20

Australian Radio Broadcast Focuses on NET Cancer

A special radio broadcast today on neuroendocrine tumors from Radio National, Australian Broadcasting Corporation’s national radio network, features Dr. John Leyden, Chairman of the Unicorn Foundation in Sydney, and a NET patient. A transcript of the program will also be available. Click on Download Audio to listen to the 10 minute broadcast.  This broadcast brings about greater awareness of NET cancers with excellent information about symptoms and treatments as well as the conditions which are frequent misdiagnoses for NET cancers, such as irritable bowel syndrome (IBS).

June 17

Taiwan Launches First Chinese NET Website

Hope Society for Cancer Care in Taiwan has launched the first Chinese NET website.  Featured on the site is Prince Star, a renowned Taiwanese astrologer, who is also a NET cancer survivor.  Diagnosed in 2006 he spent 10 days in a coma and in order to save his life, surgeons amputated his left leg.  In the YouTube video on the website, Prince Star talks about his treatment and experience with NET cancer.  His mission now is to help bring about greater awareness of NETs.  Visit the website at http://www.net.org.tw.

June 16

NET Cancer Survivor Featured in UK Daily Mail

Peter Stothard, a pancreatic NET survivor, is featured in an article in the UK Daily Mail.  Mr. Stothard, a patron of the NET Patient Foundation and author of On The Spartacus Road, A Spectacular Journey through Ancient Italy, reflects on a new book entitled The Cancer Survivor’s Companion and his experience as a cancer survivor.  READ MORE

June 5

News from Australia about PRRT

The Unicorn Foundation in Australia has received over 1,500 signatures for the State Government to provide funding for PRRT in New South Wales. The Hon Andrew Stoner presented the petition to Hon Jillian Skinner. This is a significant step for New South Wales NET cancer patients.

May 31

Breaking News: U.S. FDA Approves Pfizer’s Sutent for Pancreatic NET Cancer Patients

The U.S. Food and Drug Administration announced on May 20, 2011 approval of Pfizer’s Sutent (sunitinib) for advanced pancreatic neuroendocrine tumor cancer patients with tumors that cannot be removed by surgery or that have spread  (metastasized) to other parts of the body.

Nearly 90 percent of patients with pancreatic NETs are initially diagnosed with locally advanced or metastatic disease. Pancreatic NETs are reported in two to four people per million annually worldwide.

Mace Rothenberg, MD, Senior Vice President of Clinical Development and Medical Affairs for the Pfizer Oncology Business Unit said, “This approval is good news for the physicians, patients and caregivers who have had limited treatment options for this rare and difficult-to-treat tumor.” Read more

May 30

Welcome to the Newest Member of the World NET Community

A warm welcome to the French NET organization APTED, L’Association des Patients porteurs de Tumeurs Endocrines Diverses, the newest member of the World NET Community.  To read more about APTED in French, CLICK HERE.  And CLICK HERE for the Google English translation of their website.