Renal Cell Live!

Thursday, June 15, 2006

We all have to start somewhere.

I've thought off and on, mostly off, for several months about starting a blog. I've been reluctant to do it - who will really want to read this? - but here goes. This blog focuses on living with renal cell carcinoma (RCC), commonly known as kidney cancer, with incursions from other topics. (One cannot live by disease alone, to paraphrase.)

I won't bore you with details but I was diagnosed in September 2000 in an emergency room. I had never heard of RCC before and I am fairly certain that my doctor at the time hadn't either - his recommendation to me, after 2 years of me trying to get answers regarding back pain, fatigue, insomnia, and general malaise, was to seek psychiatric help because it was all in my head. He couldn't have been more wrong. One day after diagnosis I had my left kidney removed. I fired the doctor and found another, had 6 weeks of recovery, returned to my job and life as normal (so I thought). In October 2003 the cancer was back, this time in my liver. More surgery, January 2004, to remove the tumor. More recovery, this time complicated with abscesses and other unpleasantness - 7 months of recovery during which I worked as much as I could, with interludes of illness and hospitalization. Two months after being declared healed, more lesions were found in my liver.

Since then I've retired on disability, and gone through 4 types of treatment - high-dose interleukin-2 (2 cycles, no response); a clinical trial for a monoclonal antibody, M200 (3 months, no response); a clinical trial for Sutent (good response, life-threatening side effects); and, finally, Nexavar, which seems to be working with minimal side effects.

I'm fortunate - I have wonderful doctors in 3 locations, excellent medical benefits, and amazing supportive family and friends. I've found a great support group - don't get me wrong, friends and family will do their best to keep your spirits up but those who share your disease state are the best source of knowledge, empathy and the occasional kick in the butt when needed.


  • Of course, I'm a fan. I hope to learn more about the monster who is trying to do away with my BFLB. Happy blogging!

    By Blogger Swanknitter, at 7:44 AM  

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