Hi all , just started my glivec dose reduction , just doing it a 100 mg at a time but I’m feeling so anxious about it, it’s been my safety net for the last 18 years ,do you guys feel the same ?
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Anxious with dose reduction
After 15 years I had to discontinue for 14 weeks back in November 2019 and then continued again as soon as I lost MMR. Before the event my consultant told me that if I lost MMR then by restarting I would get it back but it might take some time and he was totally correct.
So in your case by taking 100mg you will be monitored and if your PCR stays better than 0.1 then you are in safe territory and I guess that you will be told to continue with your dose reduction.If you lose MMR then I assume you will need to restart at 200 mg or 400mg.
I dont know what the figures are like in terms of success for those who enter into a dose reduction on imatinib and whether any studies on this exist and whether it is the same as for attempts at TFR. In relation to TFR, studies suggest about 50% or more fail-my consultant said in his experience failure rate is nearer 70%.
If you think of it in a positive way then dose reduction if successful paves the way for a possible later attempt at TFR (dose reduction prior to TFR apparently helps for later success in maintaining TFR).In addition you might find that some of the side effects decline.
If your anxiety is related to the possible progression of your condition upon failure from dose reduction most haematologists will have the experience to say this is highly unlikely.Of course you will have the extra monitoring and admin but basically think of it as taking a smaller pill to see what happens.
I have been on 300mgs for several years now and reached 0.000% on this dosage for the first time - and am holding it 15months later. I have tried 200mgs twice - but both times my PCRs started rising. Both times I got MMR back quickly - and the second time I stopped 200mgs when my BCR ABL went to 0,05% as I didn't want to go back onto 400mgs again. 300mgs did the trick. I think we all have our optimal dosage. Whether or not I try reducing/treatment free again I haven't yet decided. I think my point is that we all regain MMR after losing it on a dose reduction so with careful ( monthly) monitoring, I am sure you will be fine. One plus is that the 100mgs tablets of which I take 3 are tiny - much easier than the 400mgs bullets.