3 replies to this topic

[stephiericks]

My husband's 6 month bone marrow test showed 50% still showed the Philadelphia Chromosome and his oncologist switched him from Gleevec to Sprycel.  I posted about this a couple weeks ago and really appreciate the helpful responses.  Unfortunately he has had severe reactions to the Sprycel in the two weeks he's been on it - last night he had a fever that got up to 103.5.  He had major chills the first night on Sprycel and this past Monday that kept him shivering (with a fever) all night.  His oncologist told him to stop taking the Sprycel for four days and he'll decide the best next move.

I know that ideally hitting complete response in one year is the goal and there are certain milestones to reach (like only 6 of 20 after 6 months, whereas my husband had 10).  Are there some patients that it takes just a little longer with Gleevec?  He had no side effects on Gleevec and we're concerned the doctor gave up on Gleevec too quickly.  Isn't it possible he could have met the 70% reduction at 7 months instead of 6?  We are confused about how this benchmark is determined - is it an average?

My husband thinks giving the Gleevec feels like the right move and giving it more time.  What are your thoughts? Would you try the Sprycel again with the terrible reaction or move on to Tasigna?  Also still waiting on the mutation results.....

We like our oncologist but he has only seen 10 CML patients and all but one did great on Gleevec and that one had success with Sprycel.  We both feel its time to see a specialist - based on what I've read, Dr. Talpaz sounds like a great fit. 

Was awful to see him with that horrible fever and he's so worried - your feedback is so comforting!

My best,

Stephanie

[hannibellemo]

Hi, Stephanie,

I also had the same reaction to Sprycel your husband had the first night. Shaking so badly I could not control it unless I was in the bathroom vomiting - for some reason I didn't shake then. BUT, the reactions became less and less severe over the following two weeks. I would still have shivers at night for quite a while and they would pop up occasionally after but nothing was ever as bad as the first night and I never ran a fever.

I wonder if he shouldn't start on half dosage when he starts back up? That may take care of it for him. I think Marnie started out that way and within a couple of weeks or so was up to 100 mg. I also had few side effects on Gleevec and none major until my liver revolted. I started at 97% FISH, at 4 months was only 72% but at 8 months was 4%. That is also when I had to stop taking it. After a 7 week period to let my LFTs return to normal I was CCyR on Sprycel at 4 months and MMR at 8. It's a good drug and should get you where you want to go. The side effects for some of us are grueling at first though.

I agree that you may want to see someone with more CML experience especially since you are possibly leaving the realm of G. Was your husband on 400 mg/day? If so you could bump it to 600 or 800. Also, you need to see what the point mutation results are. That will direct your next move more than anything.

Good luck!

Pat

[Susan61]

Hi Stephanie:  The fact that this doctor has only seen 10 patients to treat for CML, would make me move on which I have done in the past.  What dose of Gleevec is your husband on.  400mg is your base dose.  If your husband wants to stay on the Gleevec then they should increase the dose to see what kind of response he gets before switching to Sprycel.  Not everyone does good on Sprycel or Tasigna. I agree with your husbands way of thinking. If the increase in Gleevec does not work, then I would move to another TKI.  I think maybe this Oncologist is not up on a lot of the treatments.  I would try the increase, and I would go see Dr. Talpaz or any other doctor who treats numerous CML patients.  I wish your husband well on his decision.

[Trey]

Gleevec is not working for him, so he should forget it and move on.  He should re-start Sprycel now at lower dosage and work back up as needed.  Sprycel has initial side effects that go away within a couple weeks, so he should just work through them and stick with it.  Don't let the severity of the initial Sprycel side effects cause alarm -- they are weird but short-lived.  He must get back on the TKI drugs and stay on them. 

Dr Talpaz is a good choice.