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Coming off imatinib

Hello, I was just wondering if anybody on here has been taken off their tki's? My husband has been on 400mg since diagnosis in 2016. He was dropped to 300mg last year. He suffers really bad side effects, like a lot of people do eye bleeds muscle pain etc. His doctor has just discovered he's vitamin deficient, so he has to take that now. He went to see his haematologist today for his usual bloods etc and was told he wants to take him off imatinib for 8 weeks to see how my husband goes? Is this common practice now as were worried he will become ill again? As I know there is no cure? Has this happened to any one else on here? Thank you for your time.

Belinda.

 

Hi Branda, I am  have been on ½ dose for 12 months in a trial for good responders so yes lower dose can happen in well supervised situations, and I am also just starting stopping in the trial.

Having a “treatment holiday” is not that unusual for patients to see if side effects do clear, as sometimes what we think are side effects are not. However given your husbands short treatment time, it does seem likely they are. Certainly eye bleeds are common, as is muscle cramp, Imatinib particularly for the eye, I had both. 400 mg is the recommended dose, and to me 400 the one to be on early on for optimum in blood levels for efficacy. May I ask how he has responded so far, eg his PCR levels as it seems he has only been on treatment a few weeks ? (  I think this may be wrong you refer to diagnosis 2016 and to last year dropping to 300mg )  8 weeks stopping is long break to assess side effects.

Assuming you are in the UK then there is of course the option of trying Nilotinib which dose have a different profile, and many patients find their side effects change or fall away. Nigel

Hi Nigel, I'm sorry I've just realised I typed 2016 this is wrong I meant to put 2006. So my husband has been on the meds for 10years. Thank you for your time in replying to me. 

I can understand your concern.  I'd be the same.   I'm on the DESTINY trial and there's a thread about that in a pinned post and here:

http://www.cmlsupport.org.uk/thread/10724/destiny-updates-those-enrolled...

If it were me I'd want to be sure I was a good candidate to trial an immediate stop and I'd want to ensure there were a minimal of monthly full counts to check the situation.   So I'd want to know what results have been over the past year since the dose reduction before making that decision.