Hi Susan,

 

Sorry for delay in getting back to you.  With bosulif I had stomach issues,
but the main reason I had to go off was the liver enzymes numbers had gone
up.  Was off for 2 weeks now back on a lower dose, 300mg, instead of 400mg.
Stomach side effects were nasty first couple days but getting much better.
I will see doctor in 3 weeks and hopefully things will be ok.  Had to go off
Sprycel due to prolonged PE, just kept coming back!  

 

Jeff

 

From: [email protected] [mailto:[email protected]] 
Sent: September-09-14 6:22 PM
To: [email protected]
Subject: Re: [CMLHope] Sprycel side effects

 

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]> 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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