5 replies to this topic

[Cathy]

Dx May 20, 2010 on 400 Gleevec since.

Hello, well not good news for me. And I know everything will be fine but when an tire iron is thrown in it throws me for a loop every time. My last Fish numbers were higher. My Onc has been considering changing me to Tasigna for a couple apts now. I wasn't crazy about the idea even though I imagine it will get me to 2nd remission faster its almost been a year and I'm not there yet close but I've been not doing much slowing down lately. I have just started to feel better, less fatigue, less achy, rash well that comes and goes less itcy. Thinking I was starting to get to a place I was feeling better then now have to try a new drug. I'm just worried about the side effects, especially the headaches.I'm prone to headaches, and migraines sometimes anyway so I don't need a drug to help me get them. I know I may not get any right? LOL

My question is does changing the drug from Gleevec to Tasigna does the fatique come back like in the beginning when you start gleevec? God I hope not.

My doctor is going to start working with my insurance to try to get them to want to pay double now! That worries me too.I need my job to pay for my treatment and I do feel sorry for employers having people like us !  Then he'll have me come in and discuss it and I'm sure the Ekg thing and all. I'm dreading it as you can tell. Even though my common sense tells me I'll get to the goal faster. Just don't want to feel like crap again! Okay I'm done complaining.

Just curious if the fatique is going to start all over and as bad as with Gleevec in the beginning?

Thanks,

Cathy

[JoshLee]

Hi Cathy,

       I started Tasigna 4 weeks ago and everything is going well. It seems to me that the side effects from Gleevac seem to be more severe than on Tasigna. I have experienced some mild indigestion, mild fatigue, and a few heart palpitations. The heart stuff really isn't an issue unless you have a family history of ventricular and arrythmia problems or if your QTc interval is already long. Your QTc interval my elongate a little bit because it is a symptom of taking the medicine, but as long as it stays under 440 I think you're good to go. I am not a doctor, but I've done all the google biz and that's what I found. I told my doctor that I had some heart fluttering from time to time and he had me walking around with a heart monitor on so I could capture the "events" to see what the nature of them was. Basically taking little EKG's every time I felt something out of the ordinary. In nothing else, it helped to set my mind at ease. I know we all tolerate this medicine differently, but the fatigue really hasn't been that big an issue. I get tired out if I go full steam all day, but we're fighting a major illness with some pretty powerful stuff, so I think it's to be expected...or at least that's what I tell myself. I started taking my medicine at 9am and 9 pm, but then found that getting together for dinner with family and friends was a drag because I couldn't eat! I now take my meds at 4 am and 4 pm and it seems to work better. I just set an alarm, thrown down, and then go back to sleep for a few hours. My journey hasn't been as long as yours, but I hope I keep making strides. Best Wishes for a speedy response! -Josh

[Cathy]

Josh,

Well thank you for sharing your experiences it always helps to talk to our friends on here. It will be a blessing if I can get through this without too many side effects. It's good to to hear your doing so well and in only 4 weeks! When were you Dx? Are you on Tasigna for first drug?

A cute story is my son told me to be like Lance Armstrong, he never lets anything get in his way! I guess that is good advise too! LOL

Have a good evening,

Cathy

[Trey]

In general, you will not start over from zero with Tasigna with regard to side effects.  But there will be new side effects that will start from zero with that particular symptom.  Everyone is different, so it may be better or worse.

[cometbro]

Hey Cathy, I don't even know how you tolerated Gleevec that long.  I took it for about a week and a half and my bones were hurting so much with stabbing pains.  As soon as I took Tasigna, I was MUCH better.  Side effects were very minimal.   Like Trey said, everyone is different in the side effects, but in general, Tasigna seems to have much more tolerable side effects than Gleevec.

My fatigue was also much less to non-existent with Tasigna.  I didn't take Gleevec for that long, and I am glad because I did not like it one bit.  It would be good to hear from more people who have switched from Gleevec to Tasigna.  So far, my experience with Tasigna has very good in comparison to Gleevec.

[Cathy]

Good morning,

Thank you both for your comments. I think today is a new day and I don't feel as freaked out by this. And there really wasn't a reason to feel that way. Just thinking you could have a mutation or something that caused the Gleevec to stop working is just in the back of my mind. But I haven't even got into see the doctor yet they are setting up my Ekg and working with my insurance. Thanks friends. I do think maybe this Tasigna will be better then Gleevec it has taken me this long to get over extreme fatigue and working full time with a life, reduing my bathroom now too, it just wears me out. So I'm looking forward to a better quality of life! Not thrilled about working out the hours when to take it and twice a day but it does sound like people feel better on Tasigna and its stronger so I should move faster toward my goal. It's all good! LOL

Some one said once it was 325 times stronger ! Wow that is like night and day!

thanks again!