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Side Effects of Glivec and other TKI's

Hello Everyone,

I am 28 and i was diagnosed with CML(Chronic Stage) in May this year. I am taking Imatinib 400 daily. My counts are within normal range. I was woundering if anyone knows anything about the longer term side effects of Glivec and other TKI's. I have read some stuff on the internet which was scary. I am just very confused and worried about it. I would appreciate if someone who has been taking or has taken these drugs over a longer time period could clear up my mind or share their experience of these drugs with me. Any advice or information is welcome.

Thanks

Shaz 

Dear Shaz,

I started Glivec 400mg Feb 2008, and have been on it since then. I had the same worries that you have about side effects and could not find a satisfactory answer. I believe that I understand why now. Different side effects can appear at different times., and how serious it affect you depends somewhat in your particular circumstances. In my case the first side effect to appear was anemia, within weeks that I started taking it. Within a month or two it had dissapeared. Then I had some skin rashes appearing and dissapearing in a timescale of months, after a year these also ceased. Then I had muscle cramps, specially in my feet, which come and go. Lately, after two years of usage I have started to feel specially tired. Also, since the beginning I have experienced some swelling around my eyes which make me look very sleepy for several hours after I wake up...as I work in an astronomical observatory this has not been much of an issue as almost everybody there looks sleepy most of the time! But I guess this would be an issue if you have to be in front of customers looking your best..


As you can see in my case the side effects have been minimal. So I hope that you do as well as I did. For me the side effects have been not much of an issue, except that, if I have to give you a figure, in terms of the energy I have is probably 75% to 80% of what it used to be. I was able to give 150% during times of special need at work, now I have to plan carefully so as not to put myself in too much stress. (by the way, I am 50-something..)


Cheers,

Fernando

Hello Fernando,

Thanks for your messege. Yes i agree with you that different side effects appear at different time and every one responces differently to the drugs. When i started taking Glivec i had terrible aches and pain in my legs. But over the time it went away. Now i am not having many side effects. Slight discomfort under my left rib from time to time. I have read online  that some people developed some sort of heart problem with glivec during the trials of glivec. I am not sure how  true is it. I spoke to my consultant at the Kings College Hospital London and he said he has never come accross someone who had devoloped any sort of heart disease. Do you know anything about it? Are you in remission? Have you considered having a transplant? I really apreciate your help.

Thanks

Shaz 

Hi Shaz

It is all a bit worrying when you first start.  I was dx in June 2008 and I am on 400mg Glivec. I have had minimal side effects, wearyness at the moment is top of the list, nausea, but 2 pieces of toast seems to solve that one, cramps in my feet, panda eyes, but they all seem to come and go. None of the effects have been long lasting or debilitating. I am 60+ and still play golf twice a week. All the best for the future.

Tony 

Hi Shaz

I think the number of people who developed any sort of heart issue during the trials of Glivec was very small indeed and I am not even sure if they ever linked the issue to Glivec. I am not surprised therefore that your consultant has never met someone who has.  I am not worried about that at all.  (Dx May 09 and I'm 43 by the way).  I am in molecular remission with few side effects, and would not contemplate a transplant unless and until all TKIs had failed in me. The risks from a transplant are so much higher than taking the TKIs.  You will find many people through the various CML support groups here and around the world who have been taking Glivec for many years, and the numbers taking it for more than 10 are increasing.

Hope that gives you confidence - it did me. And good luck.

Best

Richard