Raising awareness of neuroendocrine cancers around the world

NET Cancer Day

November 10

May 30

NET Cancer Patient Featured in Video about Cancer of the Unknown Primary

Making the unknown . . . known is the theme of a new video about Cancer of the Unknown Primary (CUP), the name given to a cancer that has spread, with an unknown starting point (or primary site).  Paul Paterson of Australia is an example of someone who has neuroendocrine cancer with an unknown primary.  Approximately 13% of people with NETs do not have an identified primary site.  Watch the video about Cancer of the Unknown Primary, featuring Mr. Paterson, by CLICKING HERE.

May 14

FDA Approves Everolimus as First New Treatment in Nearly 3 Decades for Advanced Pancreatic NET Patients

The US Food and Drug Administration (FDA) has approved Afinitor (everolimus) tablets for the treatment of progressive pancreatic neuroendocrine tumors in patients with unresectable, locally advanced or metastatic disease.  This marks the first approval of a treatment for pNET patients in the United States in almost 30 years. According to Novartis, which manufactures the drug, approximately 60% of patients with pNET exhibit advanced disease at the time of diagnosis.

May 14

Scottish Medicines Consortium Approves Use of Sunitinib for Pancreatic NETs

The Scottish Medicines Consortium has approved the use of Sunitinib for pancreatic neuroendocrine tumor patients, ahead of a decision to introduce the same medicine in England. The SMC said that Sunitinib improved the quality of life for people who were suffering from pancreatic NET, a cancer affecting up to 240 people in the UK every year, typically between the ages of 40 and 60. In the first year of use, an estimated 16 people in Scotland are likely to be prescribed the drug. Cathy Bouvier, director of the NET Patient Foundation, said the move was very encouraging. “The results in this case have been superb, increasing survival times and quality of life.”
Extract taken from The Times Scotland  May 10, 2011

December 9

Publication of New Book “Men Have Flushes Too”

A new book has just been published by several Dutch organizations, including World NET Community member, NET-groep. Written for physicians, specialists, and other professionals, the book features an 80-page medical section focusing on NET research and quality of life for NET cancer patients prior to a correct diagnosis of neuroendocrine cancer. There are also 9 stories by patients and their partners recounting their personal and medical history.

Press release NET-group 29112010

December 2

Pfizer’s SUTENT Gets EU Approval For Pancreatic NETs

Pfizer’s SUTENT Gets European Approval For Pancreatic Neuroendocrine Tumors

Pfizer Inc. (PFE) Thursday said that the European Commission has approved SUTENT or sunitinib malate for the treatment of unresectable or metastatic, well-differentiated pancreatic neuroendocrine tumors with disease progression in adults.

The company noted that the approval is based on results from a randomized, Phase 3 trial that demonstrated SUTENT more than doubled the time period that patients were free from disease progression or death.

The progression-free survival for SUTENT was 11.4 months compared to 5.5 months for placebo in 171 patients. While the overall survival data were not mature at the time of analysis, the overall survival favored the SUTENT arm compared with placebo.

SUTENT is an oral multi-kinase inhibitor approved for the treatment of advanced/metastatic renal cell carcinoma and unresectable and/or metastatic malignant gastrointestinal stromal tumor after failure of imatinib mesilate treatment due to resistance or intolerance.

Copyright(c) 2010 RTTNews.com, Inc.
– http://www.stockmarketsreview.com/news/65240/

December 2

‘My Unusual Cancer’ Story on BBC News

Philippe Parker has a very rare cancer – so rare few have heard of it.

He was diagnosed with neuroendocrine cancer – which starts in hormone-producing nerve cells. They usually occur in the digestive system but can occur in other parts of the body.

Philippe, who is from London, was lucky. He was diagnosed six months after his first symptoms, including abdominal pains and itching caused by jaundice appeared. But others with the cancer waited around five years to find out what is wrong.

An ultrasound scan revealed Philippe, 39, had a blockage in his pancreas – and most of it had to be removed.

“At first they thought I had contracted something like hepatitis on holiday, or an inflammation,” he said.

“But I had a blockage. A tumour.”

“The tumour was unusual and difficult to determine. It took quite a while before I could get a biopsy.”

When he did it confirmed that Philippe had cancer.

Janet French, of the Association for Multiple Endocrine Neoplasia Disorders (AMEND), agreed that getting an accurate diagnosis is difficult.

“From a recent survey we found that on average patients visited GPs 30 times before getting referral,” she said.

“Patients had an average of 15 referrals; saw an average of 10 different consultants or doctors in hospital and required an average of 15 visits to get a diagnosis.”

She added: “There is a lack of knowledge in all sectors of the NHS, and a patient needs to be treated in a specialist centre where they actually stand a chance of the medical staff having heard of it and know the right things to do and when to do them.”

Philippe is now being treated at the Royal Free Hospital in London with interferon therapy, a type of drug therapy which stimulates the body’s immune system to fight the cancer.

And although it will not cure his condition, it keeps it at bay.

“It is not really curable and not one of those cancers you can be rid of,” he said.

Neuroendocrine cancer is rare with up to 2,000 new cases a year in the UK
It is a cancer of the hormone-producing cells of the body’s neuroendocrine system
Neuroendocrine cells are found throughout the body in organs such as the gastrointestinal tract, and lungs and there are many types of neuroendocrine tumours
The cancer mainly affects the small intestine, pancreas and lungs. It often spreads to the liver.

28 November 2010 – ‘My unusual cancer’ By Jane Elliott Health reporter, BBC News
– http://www.bbc.co.uk/news/health-11838147

November 12

Fun Run Raises Carcinoid Cancer Awareness

MISSOULA, Mont. — Some cancers are so rare, it can take five to seven years for doctors to correctly diagnose them.

Family and friends of patients in Missoula are spreading awareness of carcinoid cancer.

Most carcinoid tumors are found in the G-I tract.

Diarrhea, flushing, abdominal pain and wheezing are a few of the signs of carcinoid cancer.

Denise Copeland’s sister has carcinoid cancer. She says it is very hard to diagnose. “Some physicians aren’t even aware of carcinoid cancer because it is considered a rare disease. There is only one drug on the market for the treatment of carcinoid. Normally, chemo is not a good option because it is considered a slow growing cancer. So, surgery is considered the best choice for most patients.”

Copeland and other volunteers are organizing a fun run in Missoula called the ‘Run For Hope.’

Click here for full article

November 10

California Governor Expresses Support for NET Cancer Day

seal of the Governor of CaliforniaCalifornia Governor Arnold Schwarzenegger has written a letter of support for the cause of NET cancer awareness. The Governor said: “With no cure currently available for this metastatic stage of neuroendocrine cancer, it is important to increase awareness of this disease.” His letter is dated 10 November 2010, date of the first Worldwide NET Cancer Awareness Day.

November 10

Sufferers of rare cancer speak out: NETs often misdiagnosed

North Bay Nugget | A Day in your Life –
At first, Jackie Raney’s doctor thought she had blood spots in her liver and that she suffered panic attacks. Beryl Lemke’s doctor thought her patient suffered from irritable bowel syndrome.
Margaret Binkley’s daughter suffered through her teen years, the problem resulting in an appendectomy, and more years of uncertainty. But when Beverley Binkley Claxton was diagnosed with carcinoid neuroendocrine tumours (NETs), her reaction was the same as Raney and Lemke.
“What is that?”
“Even most medical people have never heard of it,” Binkley said Wednesday as she, Raney and Lemke manned a table at North Bay and District Hospital to raise awareness of the disease. They are members of the Cardinoid NeuroEndocrine Tumour Society of Canada.

Click here for full article.

November 9

Coping with Cancer: Worldwide NET Cancer Awareness Day – November 10

The World NET Community announces the first Worldwide NET Cancer Awareness Day on November 10, 2010, to raise awareness about cancers called neuroendocrine tumors (NETs) and the need for timely detection and diagnosis.

Click here for full article at Coping with Cancer.

Coping with Cancer is a premiere resource for the cancer community. The primary purpose of this magazine and website “is to empower the readers (be they patients or professionals) by providing the knowledge they need to cope with the many issues confronting their daily lives.” Coping with Cancer is featuring the first Worldwide NET Cancer Awareness Day on the home page of their website in support of the NET cancer global awareness campaign.