New Member
Posted 20 August 2012 - 03:07 PM
I was diagnosed in January with 100% leukemia cells and in April it was 46% and now in July it was at 12%....my doctor says this isn't good enough and wants to up my dosage. Well, he really wants me to switch to Sprycel or Tasigna, but since my side effects on Gleevec are slim to none (just a few annoying things...) I don't want to switch.
Anyone have to go up to 600mg of Gleevec? Did your side effects get a lot worse?
Advanced Member
Posted 20 August 2012 - 03:52 PM
Hi, Amy. . .
I don't have info with regard to your question, but I've heard that higher doses of Gleevec can be difficult to tolerate. I've been on Sprycel for a little over a year, and have had a much better time on Sprycel than I did on Gleevec. All of the TKIs seem to affect everyone differently. Just wanted to let you know that not everyone has bad side effects from Sprycel.
Good luck,
Marnie
Advanced Member
Posted 20 August 2012 - 07:32 PM
Amy - I was dx with CML in May 2010 and put on 400mg. Gleevec. My response was similar to yours but I began to suffer myelosuppression (Neutrophils went significantly below normal) and I was reduced to 300mg. Gleevec. That was a failure and my leukemic cell count started to increase again significantly back to 100% (i.e. Gleevec failure). I was put on Sprycel and once I adapted, my leukemic cell count went from 100% to 0% in seven months. And that happened on only 20mg. Sprycel. Zero side affects with Sprycel (that I can feel) at that dose.
Consider making the switch. You'll be glad you did. You can always go back if it doesn't agree with you.
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
Member
Posted 20 August 2012 - 08:09 PM
Hi Amy,
I was dx in July 2011 and put on Gleevac 400. At 11 months I was 1.7. I was upped to 600mg. That was June 15th of this year. I had no increase in any side effects going up. The only side effect on 400 I experienced was some puffiness around he eyes and that seems to have gotten slightly worse since jumping up. I take my Gleevac after dinner. I have a friend that has been on 600 for 7 years without a problem as well.
I think if you are doing good on 400 your chances are good that 600 will be ok. I say give it a try.
Good Luck
Advanced Member
Posted 23 August 2012 - 04:33 PM
It is very dependant on the individual. I was on 400mg Gleevec, then went to 600mg and the side effects were significantly worse, and it tanked by blood counts. But there are teenage girls on high dose Gleevec who tolerate it well. So there is no single answer.
New Member
Posted 24 August 2012 - 04:23 PM
What were your side effects? Is there anything I should look out for? What happened to get you down to 200mg? That's where I want to be one day
New Member
Posted 24 August 2012 - 04:24 PM
Are you not able to go back down to 400.? I was really hoping to be able to go back down eventually.
New Member
Posted 24 August 2012 - 04:25 PM
Ok. Thanks for the info scuba! I am honestly really scared to switch. :/
New Member
Posted 24 August 2012 - 04:26 PM
Good to know because honestly I'm really scared of sprycel and tasigna
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