Hi Sheila!  I have been on Gleevec since April 2005.  I was 23 yrs old
when I was diagnosed.  I am an only child, so I've no sibling match
either.  I wasn't responding the way I was supposed to (or perhaps as
quickly as I was supposed to), so in June 2005, I was upped to 600mg
from 400mg.  My blood counts were good except for my platelets, which
had to come down (they were around 1000, when they should have been
around 400.  They are low-normal now, around 150).  Anyway, I felt
kinda crappy on the 600mg for the first little while.  My spleen had
finally reduced in size, so I didn't have to worry about it, but I had
quite a bit of bone pain in my legs and I wasn't sleeping the best.  It
did go away, but not for about 6 months.  Just want you to know if
you're not feeling the best, don't worry!  It will improve.  So my
doctor did a molecular study in November 2005, and although my blood
was good, I was having no cytogenetic response whatsoever.  I was
upset, because then he put me up to 800mg.  I thought I would feel even
worse.  But for some reason, now that I am taking a 400mg in the
morning and one at night, I feel so much better.  I began sleeping
better, I put weight on that I lost, and the bone pain went away.  I
feel like my old self again.  And guess what.  I just got a call last
week from my doctor and he told me I am doing "excellent."  (Those were
his exact words.)  For whatever reason, the 800mg has made all the
difference.  It has taken me 14 months to get to that point.  I've
heard that Gleevec can sometimes take 18 months to kick in.  Keep the
faith, you can do it!!!  Just keep focused on what you want to do, and
know that it can and will happen for you.  I know it can be easier to
say than do, but stay positive and focused!!!  Obviously when you are
on the Gleevec it is working for you, hopefully soon you will find a
solution as to how you can use it as a more permanent therapy.

Take care!!!  Best wishes, Chrissy


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