4 replies to this topic

[Barb@Anderson]

I have been on Gleevec since DX in May 2011. Started on 400 and had side effects such as fatigue, nausea.  My numbers were coming down so my onc dropped my doseage to 200 which worked good until last July when they started going back up.  New onc started me back to 400 three times a week and 200 the other days. Side effects were even worse than when I was on it before.  In fact now when I take the 200 MG, I get sick and stay sick most of day.  I've tried taking at different times of day and still was sick.  Tried at night with evening meal and could not sleep.  Saw my onc today and talked to him about it and he said he was hesitant to change me since I was holding steady with my numbers. Geez, he's not the one staying sick all the time and to tired to get up and do even my laundry and meals.  He did tell me he would talk to me next time when I go in six weeks about changing to Tasigna.  He said I would have to have an EKG before taking it and another in about a month after starting it. 

My question is to those that are on Tasigna.  Did you change from something else and what are the side effects?  He did tell me that had he been my onc at beginning, he would have started me on Tasigna at DX as he does all his patients.  I have seen many discussions on here that said after   changing to Tasigna, you have more energy and felt so much better.  I would be so appreciative of any discussions or thoughts on this.  So tired of being tired and sick besides. 

Thanks, Barb

[Headi]

Hi Barb,  I also started on Gleevec in 2009 with the same side effects that you are describing. I was then put on Sprycel on which I was practically free of side effects until I developed bi lateral plueral effusions  then I went to Tasigna. Much better than Gleevec. Only 2 things I have a problem with. Muscle cramps which I can control by taking potassium & magnesium & calcium supplement. The other thing is the scalp itch which I haven't been able to find help with. Thankfully no more nausea or exhaustion. It's been a much better choice for me. I hope it will be for you also. Hope this helps a little. Headi

[Ray99]

Hi, Barb,

   I am on Tasigna since dx Apr, 2012.  So far, I have only minor side effects, occasional muscle cramp.  Other than that, my life is pretty much the same as before dx.  My PCR dropped very quickly in the first four months, but stayed flat since then, just slightly over 0.1%IS now.

  Overall, I think it is a good choice for me.  It is a little inconvenient in taking them, but you can get use to it.  My doctor is thinking about switching me to Sprycel if my PCR does not resume downward trend.

Ray

[IGotCML]

I started on Tasigna in January, shortly after my CML dx.  It has been the only TKI that I have used.  I felt an improvement in my energy 1 week after starting it and the improvement has continued.  The side effects I have experienced are a rash on my face, occasional minor bone and muscle pain, occasional minor headaches, itchy scalp, body itching.  I have noticed a significant decrease in the side effects the last 6 weeks with the exception of the facial rash.  The rash is caused by sunlight exposure and simply walking across a parking lot to a store on sunny day will increase it.

[Trey]

What you have been doing is not working for you.  Insist on a drug change.  Tasigna is a reasonable choice, but we all respond differently, but will likely be better than what you have now.