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) --~--~---------~--~----~------------~-------~--~----~ [CMLHope] A support group of http://cmlhope.com -------------------------------------------------
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