After nine and a half years on Imatinib i've finally stopped taking them. I stopped three weeks ago. I haven't noticed any changes yet.
I really don't know what to expect. All my consultant said was that side effects of withdrawal can be joint pain so stock up on paracetamol. He's really not been much cop for the 4 years i've known him.
I'm just glad to be off them and hopeful for the future.
Best of luck. Have you stopped after a period on 200mg, or have you gone straight from 400mg? I have been on 200mg for 11 months, and if my PCR is still on an even keel I will stop end of next week. I didn't have any significant withdrawal issues on the first dose reduction - this one might be more interesting.
Hi, finally being able to stop taking Imatinib how fabulous ,yes getting energy back would be amazing.I have only had this beast for 9 months the thought of taking Imatinib for so long is so daunting.Is this round about the norm 9 years ish or has anyone on here been able to stop sooner ,I would be interested to know.Good Luck for the future and Congratulations,Regards ,Denise.
I don't know if the stats have changed, but I was told back in 2009 that most people would never get to undetectable, that only a very small minority would ever see that 0.0000 on their PCR. It was thought that safety came with 0.1, but treatment could never be discontinued. But time moves on, and now the new question for the future is, can some people safely quit treatment even if they are NOT undetectable? Quite a leap for research within only a decade. Yet, I believe that it's still true that most of us won't ever see "undetectable." The difference now is, we feel bad about it, like we've failed. Less than. As much as I'd like to stop taking a TKI, I'd rather be cured first. I sometimes wish there were less fervor, energy, and enthusiasm over striving for undetectable and quitting the drug and more on finding something that knocks out the original leukemic stem cells for good.
You pose a good question, though, and I think I'd like to turn it around and view it from the veteran CMLer's end: If you've been at this for 10 years and haven't gotten to undetectable, are you ever going to?
At the patient day in Birmingham on Saturday we will hear the latest on this subject from the top researchers in the UK. The Destiny data is indicating that there is a good chance of people being able to achieve TFR, but my consultant said there was a trend emerging that this was more likely after a longer period of TKI therapy. I'm not sure if we can put a number of years on the term a longer period yet - looking forward to hearing about it. It has been 11 years for me; not taking pills when I brush my teeth in the morning is going to feel VERY strange.
Back in 2009 i was told i'd be taking pills for life unless a cure came along. I'd been undetectable for most of my results bar the odd 0.001 or 0.003. I wanted to stop back in 2014 but my consultant kept saying to wait until results of the trials came out. I kept nagging every six months at my check up. I was very surprised last month when he said i could call it a day.
I have a few cml friends online and some didn't respond well to Glivec so changed to another pill and had fabulous results. Others had tried many pills and didn't hit undetectable. I do think we'll see a cure for this in our lifetime. Many great advances have been made over the past few years.
See below for summary of Destiny:
https://learningcenter.ehaweb.org/eha/2018/stockholm/214524/richard.clar...
Note that time of treatment and depth of response (MR4 vs. MMR) were both independent predictors of RFS (recurrence free survival) and note that 72% of the MR4 and greater cohort were still in RFS 2 years later. All of the Destiny participants first cut dose in half for 1 year before quitting. The 72% result is far better than other trials where participants quit from full dose, thus adding some credence to the possibility that less TKI helps rebuild the immune system's ability to control CML once cessation actually begins.
My oncologist is willing to supervise my cessation attempt once I hit 3 years of treatment a year from now and assuming I maintain my >MR4.5 response. I have been on 1/4 dose Tasigna for 1 year now, so I've done the first step (dose reduction), albeit a lot faster than the Destiny participants, due to multiple side effects.
Good luck on your effort to quit. I hope I am with you in another year.
