Hi, Oana,
I wanted to weigh in on your questions about drinking wine. I started Gleevec on January 6, 2009 and did very well on it for 8 months with a short break for low counts. I don't drink heavily but I do like a glass or two of wine on the weekends. My liver enzymes always stayed below mid-normal range (19). I had ordered a couple of cases of our favorite summer wines for my husband's birthday party (a lovely Toad Hollow Rose and our favorite New Zealand Sauvignon Blanc - but I digress). To make a long story short there were several bottles left over and I started having a glass (or two) in the evenings with dinner.
At the end of July it was noted that my liver enzymes had gone up to the 80's for ALT and 60's for AST - a note was made to watch them. Went to Mayo for my check up in August and my ALT was in the 1200's and my AST was 500 something (way high). I was taken off Gleevec and my liver enzymes were back in the normal range within 6 weeks. The decision was made after much due diligence by my oncs that I probably could not take Gleevec at any dosage level and I was switched to Sprycel. My enzymes are holding in the mid-to upper 20's - I wonder if they will ever go back to where they once were.
I certainly can't prove it was the increased alcohol intake that caused the liver issue but I will always wonder and I haven't had a glass of wine since because I want to know in my own mind that there is nothing I did or could have avoided doing if this issue crops up again. So, no alcohol and absolutely no tylenol or anything OTC without my doc knowing about it.
That said, I really miss the wine, but when we are taking a medicine that is known to be tough on some livers why take chances. Wish I hadn't. Good luck!
Pat
A recent study of a large group (over 800) of CML patients taking Gleevec who survived the first two years and had at least a Complete Cytogenetic Response (CCR/CCyR), over the next approx 4 years only .6% succumbed to CML. That is a 99.4% survival rate over the 4 year period for those who made it through the first 2 years with at least CCR. The study excluded those who did not achieve and maintain CCR by the end of the second year after diagnosis, so this data is about the longer term, and excluded those who succumbed during the first two years. This study also only included Gleevec patients, so the other drugs would likely perform at least as well. So this study supports a favorable long term survival rate for those who respond well to drug therapy.
Hello everyone,
Thank you for your answeres Phil and Pat. My doctor is just telling me the nunber of white cells and level of hemoglobine. I really dont know what kind of tests they are doing on me, not even if they are monitoring my liver...I am fighting to understand now what tests they ussualy do in this cases. I couldnt serach on the net untill few days ago, as i was bursting into tears, i only saw praediction like 1-3 years etc. My husband told me that was without any treatment, and couse i am on glivec i will be allright. I saw different stories not only here but on others sites too, where the doctors are very ...opened...if i ask them, they answer, not into many details, but they answer, if i dont, they just tell me i'am ok and will see me the week after. i now go to blood tests on every 3 weeks or even once a month (they told me this last week when i was to the tests). i dont really know what tests they made me in the first place, they give me glivec and becouse my husband was reading a lot when i was dx and hospitalised, he talked to the doctors. i know i am PH+, and i belive i have a complet haematologic response by now. Are your doctors telling you a lot of what they are doing on you..orlike in my case you are looking for answers in ohetr places?
I wish you all the best,
Oana
I was diagnosed with CML PH+ in 1993 at age 16 (currently 33), had an allo and went into remission for 11 years before relapsing in 2004, in blast stage. Bad news. I've been on Gleevec now since January 2004, and now my problems are mostly figuring out how to have a life without the harrowing spectre of communism....I mean, cancer, hovering over me. I look like a Shar Pei just about every morning, except when I'm really good and lay off the salt, which is hard to do when you're like, screw it, i survived leukemia twice and I have to give up Vietnamese food? Also, ever since my insurance stopped covering Zofran I want to puke a lot. Basically I just have to take it with a big meal, no matter what time of day that is. Sometimes that doesn't help, and I just have to lie down and watch some dumb TV to take my mind off of it, breathe deep and say, this will pass. It seems no matter what i do though I end up having to vomit about once a month. I have always had a sensitive stomach anyways, certainly not helped by the ravages of chemo and radiation.
My NP did tell me there is a study underway to see if Gleevec is unnecessary after a certain point. I guess someone decided it was more important to try and have a baby than to stay on Gleevec, so they stopped taking it, had a baby, and haven't relapsed.. It's got a few years to go, but wouldn't that be nice? Hard to imagine life without it.
Bottom line, my tests are always flawless, I'm in decent shape (overweight, due to my own gluttony), but I run or go to the gym four or five days a week. Nothing heroic. I did go on a no salt diet for a while and had almost no eye puffiness, but.....I like salt.
Hope this is helpful.
My mom had CML with a pos Philadelphia chromosome, she has been on gleevac since Sept 1999 and is doing wonderful, the Philadelphia chromosone has "dissappeared" she does have the
side effects of diarrhea and fluid around her eyes, but otherwise is doing well
Hi: Glad your mother is doing so well. I was diagnosed in 1998, and started taking Gleevec in 2001. Doing great as far as I can see, and I too live with the side effects. Hope your mother continues to do good.
Susan
thanks Susan, I too am glad it is working for you, you must have been on a trial like my mom when it was called ST157L or something like that. Now Gleevac is given as first line of defense for those diagnosed with
CML. I think the side effects can be depressing, but the alternative to not being alive far outweighs them. my mom has been told she can lower her dose , and we know people who have been on and off it, for various
reasons, but she chooses to stay at the higher dose. for anyone who is newly on the drug, be positive, it is one day at a time for all of us, whether we get leukemia or in a car accident. I wish you well, but most of all
I wish you a positive outlook on life. take care
Hi: Yes it was called STI-571, and I was diagnosed in 1998. The thing was that the trial was not available yet. I went through all the consults etc. for a Bone Marrow Transplant. I had no match, unless I went with a unrelated donor. I started out on the Interferon and Ara-C treatment, and then that was destroying my liver. I then was put on Hydrea in April of 1999 to keep my counts down until we could figure out what I could do next. It was a battle not knowing what they were going to do for me . I finally did all my own calls and research until I was able to get into the trial in New York, but that was 2000. Then the FDA approved the STI-571 in May of 2001, and thats when it became Gleevec.
Your mother was really fortunate to be able to start the STI-571 sooner. What dose has your mother been on. They started me with the standard 400mg, and I am still on the same dose. I have been fortunate that I never needed any adjustment. I just pray that I can continue with what I have been doing. It took me 9 months to get into a remission, and now I have been PCRU for quite a few years.
CML is a very tricky form of Leukemia, therefore, if they find something that works for you then you are truly blessed.
Susan