Hi all and glad to have everyone's input on this PE.  I told my onc a  few 
months back that I was afraid of PE but he said that was the last thing I  
needed to worry about.  Can't figure him out.  I am on 100 mgs daily  
Sprycel.  Seem to be doing good except I have developed painful jaw and  right 
side 
of face.  This could be another side effect of Sprycel.
Hang in everyone; and get better.
Blessings,
Jeanie<3
 
 
In a message dated 9/9/2014 6:21:56 P.M. Eastern Daylight Time,  
[email protected] writes:

Hi Jeff,

I read with interest that you had to go off bosulif  for a short time.  
What were your side effects?  What dosage were  you on?
Very interested as I am also on it.  Best wishes  for your return to it 
this weekend!  I am on 100 mg and having no real  problems.  At first my liver 
enzymes shot up, but they have returned to  almost normal now.


Thanks,
Susan


-----Original  Message-----
From: Jeff J Johnson <[email protected]>
To:  cmlhope <[email protected]>
Sent: Tue, Sep 9, 2014 3:14  pm
Subject: Re: [CMLHope] Sprycel side effects


Hi Joyce,  Seems scary but I was off sprycel for many weeks due to PE. But 
my numbers 
 continued to be good 3.6 -3.9 log reduction. Sadly I'm off sprycel for 
good due 
 to continued problems with PE.  Was put on Bosulif for short time but off 
 temporarily due to side effects. Hope to go back on the weekend after 
seeing 
 doctor Friday.  Best of luck to your husband. Your doctor is very highly 
 respected. Have a great day. Jeff
 
 Sent from my iPhone. 
 
 > On Sep 8, 2014, at 11:33 PM, Joyce Mesnarich <[email protected]_ 
(mailto:[email protected]) > wrote:
 > 
 > Have been reading the reports of various CMLers having side effects from 
the 
 various TKIs.  Jut wanted to weigh in with my husband's latest 
experiences.  He 
 was short-winded and family doc ordered a chest X-ray which revealed some 
 effusion.  We reported this to Dr Talpaz (his CML specialist) and Dr T 
wanted 
 him to have an echogram which we were able to do locally with his regular 
 cardiologist.  Dr T said to quit taking Sprycel immediately and not to 
continue 
 until he and the cardio conferred.  As of now, he will have another echo 
in a 
 week to see if there is any change one way or the other.  He has an 
appointment 
 with Dr Talpaz in Michigan the middle of October and it sounds like they 
are 
 going to have him stay off Sprycel until at least then.  It's kind of 
scary 
 being off the medication that you know is saving your life.  But Dr T is 
not 
 concerned.  Don't know where this is going next.  All part of the journey. 
 
 Continue to pray for all the warriors out there.
 > Thank you for your input.
 >      Joyce in IL
 > 
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