yeh Lenda me tooooooooooooo.
Jeanie<3
 
 
In a message dated 8/12/2010 5:17:17 P.M. Pacific Daylight Time,  
[email protected] writes:

The symptoms  you are describing are common with a lot of folks on Gleevec. 
 It seems  to be one of the reasons they are put on another drug.  I was on 
Gleevec  for  1 1/2 years then it stopped working for me.  I was put on  
Sprycel 140mg which gave me horrible headaches so they reduced it to 100mg and 
 have had great success.  Went into remission  within three months  and 
have been in remission since.  There are other side effects with  Sprycel, but 
there are with all the meds.  I gained 30lbs in the first 1  1/2 months and 
have a lot of skin issues.  I also had a lot of sinus  problems, but nothing 
I could not handle.  

If you are having such  a hard time with Gleevec, I would encourage you to 
think about one of the  other drugs.  It's hard enough to have CML without 
dealing with all the  negative side effects if something else may work better 
for you.  I'm  sure many other folks will tell you the same thing!  Just 
think about  it.

Lenda
----- Original Message -----
From: "peg"  <[email protected]>
To: "CMLHope"  <[email protected]>
Sent: Thursday, August 12, 2010 4:55:09  PM
Subject: [CMLHope] Scared to switch to Tasigna

Hi everyone,
I  am hoping someone has thoughts to share with me.  I was dx'd  in
February, started Gleevec 400mg and had unbelieveable results. PCRU  at
4 months!  However, also severe irritable bowel syndrome by 5  months!
It started as gas, bloating, diarrhea and just got worse the longer  I
took Gleevec. Finally, it left me doubled up in pain any time I  even
tried to eat. Please understand I am not a lightweight...I am  allergic
to pain meds and local anesthetics, have done a root canal with  no
anesthetic at all!  The IBS was severe. The gastro doc is certain  it
is the Gleevec. Immodium didn't relieve the diarrhea any more, nor  did
other meds relieve pain.  Only pain relief was to not eat at  all!
Didn't matter what foods I ate or didn't or what time of day I  took
the Gleevec (with food and a full glass of water).  Have been off  of
Gleevec for a week now and still working on getting bowels back  under
control, but thankfully the pain and bloating are gone. They want  to
start me on Tasigna next week and I am terrified.  I already have  a
heart arrhythmia and the Gleevec has already elongated my  QT...still
within tolerance, but close.  I am scared of dying from  long QT, (with
an arrhythmia already, how would I know I was having a  problem) and
barring that I am also scared of other side effects I am  hearing about
like migraine headaches, high blood sugar, rash....I am the  sole
support of four, so stopping work is not an option for me unless  I
would also like to stop eating and having a roof over my head!  I  want
to live, but at what price?  Has anyone else had such severe  effects
from Gleevec and found a way to improve them?? I really don't want  to
change if I don't have to.

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