Hi Everyone, in two weeks time I’m coming off imatinib after being on it for 13 years. I was wondering if anyone could tell me their experience and how they responded. I’ve been in remission most of that time but I’m really struggling with fatigue and want to see if it’s the meds causing such a low level of energy. My main side effects have always been cramps and fatigue and I’ve counted myself very lucky to only have those but the last couple of years have really seen me unable to carry on working other than very part time hours. Thanks, any info would be great as I’m nervous and excited!
You are here
Discontinuing imatinib
Hi. Good luck.
Are still taking 400mg, or have you reduced your dose to say 200mg for a while, as per the Destiny Protocol?
I found I lost most of the cramps and the really tired days when I reduced from 400mg to 200 mg for a year (having been on 400mg for a similar period to you). The impact on side effects when I stopped taking any imatinib at all was less. (I then lost TFR, went back on 400mg for a year, regained 0.000% and now reduced to 200mg again).
Some people have had withdrawal symptoms for a few week when they stopped taking imatinib. If you search the forum on "withdrawal" (use the search box top right on this screen) you might find some useful information, but remember we are all different and what happened to someone may not happen for you.
There is also a growing body of evidence that Vitamin D levels are important in successful TFR (and in resistance to covid-19). Do you know your Vitamin D level, and if it is low are you supplementing?
Thanks Alistair. I reduced myself to 200mg a couple of years ago because of the tiredness in an effort to get a bit more energy, but it didn’t effect the side effects at all. The reason I’ve asked to come off the imatinib is because I can’t seem to get my GPs or consultants to seriously consider and pursue the exhaustion being another thing as they always go back to the imatinib as the reason, so I feel I have to be able to rule it out in order to get the fatigue investigated properly. My vit D is low and I do take supplements which I will consider upping now as I only take 1 tab a week at moment. Can I ask how much you take? Kings has made me aware of the possible withdrawals but I wanted to ask on here to hear it from the people who have actually gone through some.
My vitamin D was tested a few weeks ago at 76 mmol/litre, which is about 30 ng/ml. I want to get to around 60-70 ng/ml - I suspect some people would say a bit higher than that. I recently started taking 4000IU/day, with 200 micrograms of Vitamin K2 - again some people might suggest I take more than that. Too early for any results.
Did your BCR-ABL levels stay constant at 200mg? If so, according to the Destiny trial data, you have a better chance than many people of maintaining TFR.
I really need to find these things out! At my hospital I’m under general haematology and they really only manage me generally as I’ve been so stable so long and I think I’m the only person with CML they deal with. I’ll def find out my D levels from them when I speak to them next. I’ll up my D and maybe get back in contact with Kings for some guidance. Thank you so much Alistair! I hope you are getting along ok with yours? I hope so. Do you still work?
Yes I am very busy with work and enjoy it most of the time. You may well have to ask to get Vit D tested - it is not in the normal list of tests they do - probably should be, especially in Covid times.
The Hospital should be able to give you list of all you previous BCR-ABL test results - ask them and don't take no for an answer - I got my consultant to do it for my WBC and it was no issue.
Good luck