Appointment this week at Countess of Chester Hospital, where the (new) consultant has agreed to follow Prof Clarke's proposed protocol that we cut my imatinib from 400mg to 200mg. I will have monthly BCR-ABL to check for any progression, and see them again at CoC just before Christmas. My PCR-ABl has been undetectable since 2009. If it stays at zero for a year on 200mg we will then stop. I will keep the forum posted on progress.
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Imatinib Dose Reduction Starts
All the best, Alistair. Exciting times for you
Good luck! I reduced more gradually - 300 mg for a year or more before going down to 200. I noticed an immediate reduction (but unfortunately not total disappearance) of cramps and tiredness, and hope you have similar benefits. I'm now on 4-monthly check-ups (next one in a couple of weeks), which also helps.
Good luck Alastair - DESTINY results so far are cause for optimism that you will succeed in both dose reduction and then going off completely. I have also been undetectable since late 2009 and went on Destiny in 2014. I finished Destiny in May - had a couple of blips in the results at one stage (which turned out not to be real) but other than that, with monthly testing for the first two years, then two monthly, I felt in safe hands. Reducing to 200mg immediately reduced side effects to more or less nothing. Richard
So 3 weeks into the reduced dose, it is a bit early to know much - my first blood test is 10 days away. However I've not had a significant attack of cramp, and the flatulence issue seems to be reduced. It hasn't helped that I started a cold at the same time as reducing the dose, and that lasted 10 days. Out walking the dog today, my wife commented I was walking faster than usual, and I walked straight up a hill where I have needed a rest half way up every time since we started doing this walk last year. Hadn't anticipated that impact, and makes it even more worth trying.
I, too, am on the reduced dose of Imatinib down from 400 to 300 mgs - and what a difference. I had a weight problem in that it just refused to budge despite gym, swimming walking,fitness classes etc etc. Now it's shifting. More energy, less puffing when walking up one of the many Devon hills around here. I went onto 300mgs in June and am still holding MR4 so pleased after my DESTINY failure on half dose.
Are you still holding remission on 200mgs, Olivia?
No, I'm back up to 300 mg as my last couple of PCRs showed a slight rise. I don't notice much difference in side effects, though I did have an eye bleed - very unusually for me - almost as soon as I went back to 300. Perhaps I can get back down again some time, I just hope I don't have to go back to 400 mg.
Thanks for asking!