Foundations Videos Basic Reading Medical Reading Trials Approvals
Support Groups Programs in NET cancer Resource page
Blogs
Ronny is from the UK. Some of his posts will be shared directly on walkingwithjane.org starting January, 2015.
Beth writes about her experiences with NET Cancer. She recently had surgery–and her detailed account is truly powerful.
Sunny Carney Carcinoid Cancer Fund
Sunny Carney died in early November of 2012. She was a woman in Pittsburgh, PA who regularly chronicled her experiences with NET cancer as a patient. Her husband also sometimes posted on her efforts when she was having treatments at some remote location. She was very good about detailing her experiences with various treatments. Her blog remains online–and I maintain this link in her memory. If her family closes the blog I will discontinue the link.
I like this woman for her direct, blunt style. She is in the midst of the battle and does not sugar coat how she feels. One of her recent posts links to US News and World Report’s article on how to choose your doctor–and then matches up the latest doctor her insurance company will let her see with one of the things on the list.
Lucy’s most recent blogs, as I write, include a video of how to mix blackberry powder–an aid for controlling diarrhea in carcinoid syndrome patients–and a piece on the problems with medical care in the US. Those of you who have heard me screaming about the need for a national health program in the US will enjoy–I hope–her perspective on the issue.
I have cancer. And I’ve never felt better
Tracy Krulik has a wickedly beautiful sense of humor that makes her blog a fun read. If you are having a bad day, this is a place to go. It is also chock-full of good information.
If you’ve ever wondered about what it would be young–mid-20s in this case–and be faced with cancer, Lindsey Miller will get you to see it. This is a tough kid who reminds me a lot of Jane at times.
Ann was diagnosed in early 2012 and was admitted to the PRRT trial going on in Texas. She gives a detailed description of her treatment there, then contrasts it with a trip to Germany for a similar treatment later in the year. That Europe is miles ahead of us in healthcare–especially in NET is immediately apparent. She does not post often–only when she has a treatment to talk about–but a visit is well worth the time.
Brian was diagnosed in 2005 after nearly five years of doctor visits and tests. He is also enrolled in the PRRT trial in Houston. His story is grippingly told.
Brent wrote this post on the day his wife was diagnosed with NET cancer that had metastasized to her liver. The post–and the replies to it–remind me very much of what Jane and I went through right after her diagnosis.
Scott was diagnosed with NET cancer in his bones in late 2012. He is a wrestling coach in New York state whose attitude reminds me enormously of Jane’s. His blog narrates his treatments as he faces the disease.
(If you have a blog on NET or Carcinoid Syndrome and would like a link to it here, contact me by email at the address below.)
Foundations Videos Basic Reading Medical Reading Trials Approvals
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