5 replies to this topic

[ritan/]

i've been on gleevec now for a year and am finding myself more and more impaired by the side effects. (i deal with constant nausea/diarrhea/creeping crud feeling)

my next onc visit i want to discuss the possibility of a different TKI with my my doc, but i'd like to know the good/bad of both my options, so i can go in reasonably informed. honestly, i think both will work just find for me, so i'm primarily interested in the difference in side effects in general. i've read the articles and know the reports of side effects, but i also know that talking to real people who really take the drugs will help me out more, so.... what's your experience with tasigna or sprycel?

[BY196]

I started on Gleevec and took it for a little over a year, then switched to Sprycel. I was apprehensive about the change (I am pretty change-averse) and I'm so glad I did it. I have absolutely none of the GI symptoms I had on Gleevec, which were not as bad as many people endure. I hadn't realized what a drag it was to feel nauseated every single evening, regardless of how I took my Gleevec. My musculoskeletal side effects did not go away completely but they did improve. The biggest change was the lifting of the brain fog I had on Gleevec. (Perhaps this is skin to your creeping crud.) I am much more present and focused on Sprycel. To be sure, I still deal with some fatigue, but I no longer feel like CML cost me 40 IQ points!

I ruled out Tasigna because I was concerned about compliance with the dosing requirements. Since my switch, I have gone on Synthroid and have had to deal with not eating before and right after I take it, and it turns out it's not nearly as hard as I'd imagined.  It is, however, one more thing to think about and my life is pretty chaotic already.

Good luck!

Beth

[ritan/]

the fog is horrid. i'm trying to sell my car because it's a manual and i can't remember to shift in town.

i feel just generally horrid. i didn't realize how much of it was side effects until i took a drug vacation in aug. i have constant muscular/skeletal aches and pains. random instant cramps (like charlie horses in various leg locations) happen almost daily. i feel generally lousy all the time. no energy, constant GI symptoms, hot flashes, weight gain, hair loss, and on and on.

i finally decided to have a real conversation about it because honestly, i've started thinking that my quality of life is low enough that i'd rather die earlier than keep going just like this.

[CallMeLucky]

I can relate.  I will be switching to Sprycel next month.  I was concerned about the dosing schedule with Tasigna.  Too easy to skip a pill and say "oh well, I took my morning pill".  I work, have little kids, go to school, etc, I can't be that strict about when I eat.  There were other things I also favored about Sprycel although I am not thrilled about starting at 100mg.  I am PCRU and feel it is overkill.  My doctor is big on sticking with tested dosage until there is reason to lower it so we will see how it goes.

Good luck with either drug you choose.

I have heard most people say that they felt better when they switched regardless of which drug they chose.

[Marnie]

Hi, Castle. . .

I was on Gleevec for about a year and then switched to Sprycel due to suboptimal response and side effects.  My oncologist wanted me to try tasigna, because he was familiar with it and had patients on it, but I didn't like the dose/food schedule issues with Tasigna.  I also thought that since Sprycel works very differently than Gleevec, it made sense to go with that.

I'm very happy with how things are going on Sprycel so far.  I took a 5 day drug break (or maybe it was 4, can't remember)from Gleevec, and then started on half dose Sprycel for a week.  I had heard about horrific headaches when people started Sprycel, but I had only a mild headache for a couple of days.  I think that starting at half dose and then moving to full dose worked really well for me.

My PCR dropped significantly on Sprycel, and my side effects are almost non-existent.  About the only thing I deal with is fatigue, and I think that's just a given that we all have to accept.  Some people are pretty wary of the pleural effusion issues.  I haven't had a problem with it, but some people have had a difficult time. I can't speak highly enough about how well Sprycel has seemed to work for me.

Good luck with your decision.

Marnie