Hello all,

Been a long long time since I last wrote to this group. Thought I'd
check in.  I was dxd in Oct 2002 when I was 21 years old. My WBC at
time of diagnosis was 498,000.  Since that time I've been on Gleevec
for the first 6.5 years or so (between 400 - 800mg but mostly the
latter), and I've been on Sprycel for the past year, first at 140mg
and now at 170mg. I'm young, so I suppose that helps me tolerate the
high doses, as I had virtually no problems on Gleevec for all those
years other than minor fluid retention in the ankles.  I've been CCR
for a long time but guess I forgot to tell Zavie about that :)

My PCR tests have been hovering between 0.08% (8x10^-4)and lower, the
most recent at 0.0012% (1.2x10^-5). The switch to Sprycel was an
effort to get to PCRU, but now I've got pleural effusion. It's not
particularly noticeable, but chest x-ray confirmed it along with
increased shortness of breath climbing stairs, etc. Doc said to switch
to 170mg 6 days/week instead of 7. If this doesn't work he may want to
switch me to nilotinib, but that doesn't sound like a fun drug to me.

Question is: Is PCRU really that worth it? I think I'd rather stay on
a lower dose of Sprycel, rid myself of the fluid as a result, than
switch to yet another drug. The PCR results are already really low.

Thoughts?

Hope everyone is doing well,
Sean

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[CMLHope]
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