Sunday, June 15, 2008


For reference, the Leukemia and Lymphoma Society is a wealth of information for cancer patients with leukemia or lymphoma. They have forums, downloadable pamphlets and booklets on the diseases, licensed social workers that you can call for free with any kind of questions, and a lot more. The booklet on CML does a pretty good job of explaining the disease in simple terms.

Looking up the details of cml on the web is a scary thing at first. Most information out there was published before Gleevec became the standard first line treatment. Average life expectancy was 4-5 years. I flipped when I saw this. All I could think was that I didn't want to die, I had too much left that I hadn't done yet. 35 was not the age when I should be buried.

Luckily, if you keep searching you find that Gleevec works very well. Only a small percentage of patients cannot tolerate it or become resistant to it. The 5 year remission rate is something like 85% (this means that after 5 years on Gleevec, 85% of the patients taking it are still in remission). Those are damn good odds.

Better yet, there are two new drugs with a higher potency than Gleevec. One of these is Sprycel.

Unfortunately, since Gleevec has only been around for a little over 5 years (and Sprycel even less so), no one yet knows what the long term survivability rates or side effects are. I figure though, if I'm still in remission after 5 years and it stops working then, the 4-5 year average will start there and I'll have had a good 10 years. I should get well past 40.

On a side note, orange is the color for leukemia. If you see an orange ribbon, it's for me and those like me.

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