"Local Pilot Fights Rare Disease Online"After 14 years as a pilot for a corporate airline, the FDA grounded A.J. Catone when he was diagnosed with a rare disease, neuroendocrine tumor cancer which became infamous when Steve Jobs of Apple succumbed to it in 2011.
March 8, 2013 - PRLog -- "LOCAL PILOT FIGHTS RARE DISEASE ONLINE"
Philadelphia-A.J. Catone was a gainfully employed corporate pilot for the past 14 years. Two years ago, when diagnosed with an incurable rare cancer, the FAA grounded him. Although he still holds onto the hope that he will be able to fly again, during the past two years A.J. and Elizabeth, his wife of 14 years, have travelled from Louisiana to Tennessee to New York and beyond searching for treatments and clinical trials for his disease, neuroendocrine tumor (NET) cancer (carcinoid type). But there is no cure and the disease will continue to reoccur. Almost two summers ago, AJ went from a healthy and energetic man to someone with extreme fatigue and shortness of breath. At first he thought it was due to hard work and fixing up their new home. After a visit to the local ER he discovered he’d lost half his blood due to a bleeding ulcer caused by a gastric carcinoid tumor. Subsequent surgery removed most of his stomach but six months later during a visit to a carcinoid specialist in New Orleans they learned this rare cancer had metastasized from his stomach to his liver and the disease was in its most aggressive and virulent form. NETs are prevalent in the digestive system but can occur anywhere else; they grow from hormone-releasing cells which then can cause a range of symptoms. For the Catones, last year was a blur of chemotherapy, numerous rare and expensive medications and continuously frightening medical news. Elizabeth is A.J.’s sole caregiver and works when she can. They will probably lose their home since they barely survive on A.J.’s social security disability. While researching the disease, they discovered there is a treatment in Europe called PRRT which has been successfully used in Europe for over a decade. The FDA has not approved this treatment for use in our country, although advocates from the community have been to Washington to plead the case for it. A series of the recommended three treatments costs $15,000 per treatment - out of pocket- plus lodging and travel expenses. Being a high tech guy, A.J. discovered Giveforward.com which is a fundraising site for medical bills and other expenses providing free online fundraising pages which allow friends and family to raise money directly for a loved one. This site has many gut-wrenching stories that most people never hear about, one of which is A.J. Catone’s. http://www.giveforward.com/ A.J. receives his current medical treatment at Abramson Cancer Center in Philadelphia through their two year old neuroendocrine tumor clinic which is the only specialty clinic in Pennsylvania for these diseases. The Philadelphia- NET cancer has moved from a rare and unknown cancer to becoming infamous after Steve Jobs of Apple died from it in 2011. This disease is very often misdiagnosed as menopause, rosacea, or the medical community’s favorite, irritable bowel syndrome. The NET cancer story mirrors that of other rare diseases-lack of funding for research, lack of familiarity by primary care doctors and specialists and community awareness and screenings. A.J. hopes his plight will help create awareness in our community and that he finds the support he desperately needs to obtain medical treatment. His online campaign ends May 26, 2013.The link is http://www.giveforward.com/ End
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