The old days-- Rockefeller

May 9, 2007

Hi ,

I think I was diagnosed just about a year after you were and a couple of months

after Gleevec (IM) was approved. So, I never had to go through the nastiness of

Interferon or any of the other multi-drug treatments you and others did. I'm in

the limbo (for lack of a better word) time of CML vs. Gleevec. Nobody really

knew very much about it including the docs. Just before I started my first dose

I went to a Light the Night Walk in Los Angeles and met one of the speakers who

told me about the list and that I could definitely trust the medical information

from and . She didn't tell me their last names but that didn't

matter much to any of us anyway. It was the fact that we were all I the same

kind of boat and some were leakier than others so we looked to one another for

help to bail out the water.

As it turned out I took 400 mg Gleevec for 6 months and had my 2nd bone marrow

test which revealed it had only killed 3 bcr-abl cells. That meant it wasn't

working well enough to keep going down that road. suggested doubling my

dosage immediately to 800 mg which, to her credit, my onc agreed to do. He also

said there was a clinical trial I qualified for and at that point I was willing

to try anything sane to get better. That was my first clinical trial and there

I met many CMLers who I knew from the list and others I didn't. Some died, one

woman who was very close to undetectable crossed that line and it was hailed as

evidence that the vaccine worked. It didn't work for anyone else including me.

But doubling my dosage got me into Zavie's Club and the List went on with all of

us learning more all the time and our group knowledge grew exponentially.

Gleevec stopped working for me about a year ago and when it started to go it

went fast. You should remember that. This is a tricky disease that can all of

a sudden take off in another direction at a frightening speed. I'm now taking

Sprycel, have no side effects except my thyroid numbers are up but my onc says

it's nothing serious. I'll see an endocrinologist next week and hopefully get a

common medicine that will keep me from falling asleep all the time and gaining

weight.

I miss the days when there was such a tightly knit group who genuinely cared

about one another. I don't know if that particular type of group of very

special people could ever be created again. Thanks to IM and Sprycel, life goes

on.

All the best,

Loewenkamp

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