Ciao Pat,
I did have this vomiting problem in the past. I do not know if iot works for 
you but when I take breakfast outside in thefresh air, eating a boiled egg with 
salt and bread, drinking tea with honey and a glass of water, my 600 mg glivec 
don't cause problems....  Good luck with your numbers, I still hope to reach 
zero again, will have my next check in July.
Best wishes from Italy,
Rien
Sent from my BlackBerry® wireless device

-----Original Message-----
From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]>

Date: Fri, 30 May 2008 15:01:42 
To:CMLHope <[email protected]>
Subject: [CMLHope] Numbers Rising



Hello to my CML Family, I'm disappointed that there is so little
activity in the group but I am just as much to blame as any of the
rest of it. We need to not stray from the group because we are doing
good. There are new members who need us just as we once needed each
other.
I want to address to the group, that after 4 years of basically
holding my own on my PCR numbers, which I've never reached zero, my
numbers are climbing back up. It is not that the Gleevec is not
working, it is that I have lost my appetite completely, and I am
barely able to eat much of anything and when I don't eat a good
amount, I am not able to keep the Gleevec down. If you've never
vomited up Gleevec, then you don't know what it is like but I can tell
you, it is an awful experience. You cannot get the taste out of your
mouth and it burns. So now on days when  I cannot force any food down,
I just don't take it or take maybe 200mg.
I have explained to my CML specialist at Vandy that is my only problem
with the Gleevec is lack of appetite and literally begged for
something to enhance my appetite which he has not done. He wants to
change my meds to Sprycel which I am going to be unable to do as it
causes fluid retention around the lungs/and or heart and I have
emphysema. He then mentioned another med, that I have to have have my
heart checked prior to taking it, which may be an issue as I have
hardening of the arteries. I was scheduled to see a heart specialist
at Vandy today for a EKG which is not going to detect my problem. So I
am going to get with my primary doctor and see if I can get him to get
me in locally with a heart specialist.
Anyway, my primary doctor gave me a med called peractin that is
supposed to increase my appetite. I looked this up and the side
effects are a mile long...longer than the Gleevec actually. I was so
excited and now I am terrified to even try it. I am to take it at
bedtime and the first side effect is allergic reaction which is
fatal.
Is anyone familiar with this medication? Or does anyone know of
anything else that can be taken to increase appetite??? I was holding
my own for the past 2 yrs. at 140lbs. I now weigh 124lbs. I am
terrified that my numbers are rising...and starting to panic. Any info
would be greatly appreciated.
Love, Peace, Hope & Prayers, Pat (the TN turtle)


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