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
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!
Thank you very much for sharing your results. We are baby steps into Imatinib and we find this so encouaging that it can be done. We are having issues with side effects but still hoping that we don't have to change to another TKI. We will find out next week with our 3 months BCR-ABL1 results. A lower dosage sounds wonderful so congratulations.
Would you mind sharing with me when you started Imatinib?
Thanks, and all the best.
Tim and Michelle
Thanks for all good wishes.
David, the plan is to stay on 200mg for a total of 12 months (i.e. another 8 from now). Prof Clarke's protocol says to ignore any results less than 0.1% through this period. If all is good I will stop in September and continue to be tested monthly for the first 6 months.
Tim and Michelle, I started taking imatinib in the spring of 2007. Initially 400mg, but I have always had a very low wbc ( as I detailed on another thread recently) and I went down to 200 mg at the end of 2007 for about 6 months. PCR progress stalled so went back to 400mg and achieved log 3 in 18 months, and undetectable 3 months later.
by including a de-escalation (dose reduction) phase in the first year. The thinking behind this was, and still is, that most CML patients who respond well to TKI therapy (with molecular responses at 0.1% -MR3 - or lower) over the first few years of therapy, will be able to maintain a molecular response in spite of a dose reduction.
If most 'good responders' can successfully halve the recommended dose with out losing MR3 (0,1%), then there is now good evidence that side effects are diminished, with an improvement in quality of life.
DESTINY has had excellent results and It seems has proved that although the percentage of patients eligible to stop and achieve TFR is very small (between 15-20% of good responders), dose reduction represents a pragmatic and positive approach towards dealing with TKI side effects for the majority of patients who will need to continue with therapy over the longer term.
Wishing you well, and hope you will continue to maintain your MR over the coming months.
Best of Luck on your dosage reduction
My own CML history
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Hi folks, just back from the latest appointment at the hospital, now approaching 6 months into reduction from 400mg Imatinib to 200 mg.
BCR ABL Results
Prof Clarke's protocol from the trial says don't worry as long as results are less than 0.1%. So still a factor of 20 below any need to go back to 400mg. Was at a friend's 60th birthday party last week and danced till 2 a.m. Not sure I could have done that this time last year.
Best wishes to all.
I'm always slightly wary of a 0.000% ... could just mean the test was poor, and not very specific. Whereas a really low, but positive PCR strangely gives me more comfort in some ways. I once got a 0.000% but it was from 0.02 just before, and 0.02 immediately after. I suspect a clerical error and it was someone else's blood!