I was just tested PCRU, and I wanted to post my history for those of
you keeping tabs.

As a result of a routine annual physical, I was diagnosed 10/04 with
CML showing a WBC of 36,000.  No other symptoms.  Started on Gleevec
400/day 12/04.  I volunteered to participate in a year-long dosage
trial and was randomized to a 400 dose in 1/05.  Within 30 days, all my
blood counts were normal.  At the end of 3 months FISH was 0, PCR at 2
log.  At the end of the 12 month trial, FISH still zero, PCR "stuck" at
3 log.  1/06 my Dr. increased the dosage to 800, but I couldn't handle
it, so he reduced it to 600, which I tolerated as well as the 400 dose.
 By 3/06, PCR had dropped to nearly 5 log.  By 5/06, PCRU.

I have many of the most commonly reported side effects:  Edema,
especially around the eyes and lower legs, occasional bouts of
diarrhea, weight gain (about 25 pounds on a 185-pound frame), foot
cramps at night, thin skin, etc.  I am 68, so it is difficult to know
how many of these side effects are from aging or the pills.

I discussed at length with my Dr., the desirability of switching to
dasatinib when it becomes available.  Most of what I've read indicates
that the side effects can be considerably less than Gleevec's and the
drug even more potent.  He believes that I should not consider
switching as long as Gleevec is working.  He has many patients on
dasatinib, and he says that, although it is true that a smaller (than
Gleevec)percentage have significant side effects, dasatinib can produce
a very ugly side effects profile, that in a few cases have required
surgery to correct.

Nonetheless, the early statistics seem an almost compelling argument to
me.  I hope that those of you who do make the switch in forthcoming
months, after dasatinib becomes generally available, will tell your
stories so that we can all benefit from your experiences.

Mike Burwen


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