Hi John,

Wow, spleen, vision and now liver problems.  It sounds like CML and 
the high white counts has done a number on your body.  I hope it's 
all behind you and that your body recovers quickly.  As you continue 
to stay on Gleevec don't be surprised if you start to feel bone pain 
as your healthy marrow starts to regenerate.  For me the pain was 
easy to manage but for some it can be intense.  It should subside 
after awhile.  

You mentioned low hemoglobin and that's one thing that the 800mg dose 
did on me.  My hemoglobin dropped to 8.1 and I felt like a zombie.  
This isn't unusual when a newly diagnosed patient is placed on 
800mg.  Usually the anemia and low platelets is less of a problem if 
the dose is escalated over time and your body has a chance to 
readjust.

I'm surprised to hear that you are going back to work so quickly.  I 
hope it works out well and you don't suffer from any side effects 
from Gleevec.  Please keep us posted on your recovery.  

Best of luck,
Mark


--- In [email protected], John Thompson <[EMAIL PROTECTED]> wrote:
> Hey Mark,
>  
> Thanks for the insight into the side affects of the 800mg regimen.  
My Hem/Onc said there would be more side affects but did not go into 
what they were.  Ever since I started Hydrea, my liver enzymes have 
been elevated.  My ALT and AST, which indicate the level of liver 
damage occurring, were 4 to 6 times the Upper Limit of Normal (ULN).  
At 5 times ULN, the dosing guidelines for Gleevec require the doc to 
stop Gleevec until the enzymes return to 2.5 ULN.  Anyway, in order 
to take higher doses of Gleevec, I have to split my does into no more 
than 300mg to keep the liver from heating up.  So, my doc and I are 
pretty weary of escalating the dose.  FYI, my liver biopsy showed 
that my liver was damaged by the extreme levels of white blood 
cells.  Evidently, the spleen is not the only place they hang out.
>  
> As far as debulking went, I felt fine before the process and tired 
as hell after wards.  The leukaphereisis process pulled off a bunch 
of WBC but it also dropped my hemoglobin into the 9-10 range which 
just wiped me out.  Keep in mind that my hem/onc was talking Acute 
Leukemia to me at the time, and he was not terribly optimistic.  
Aside from the fatigue and emotional trauma, the ordeal was pretty 
easy and effective.  Sounds like it was a lot easier than the hydrea 
approach.  I've had the sore joints, gout attacks I guess, and they 
suck.
>  
> I'm going back to work on Monday, so I'm pretty charged up right 
now.  I sure hope the stress does not wear me out.
>  
> Keep in touch and be well.
>  
> John
>  
>  
> 
> 
>               
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