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Anxious with dose reduction

Hi all , just started my glivec dose reduction , just doing it a 100 mg at a time but I’m feeling so anxious about it, it’s been my safety net for the last 18 years ,do you guys feel the same ? 
thanks kathy 

Same here but with much less time on full dose. Im normally cool as a cucumber on medical stuff but i have to admit I was nervous In the run up to my first bcr/abl after dose reduction.

I went from 400mg to 300mg and all is well , still undectable. I think some anxiety is to be expected but rest assured that in the worst case that you loose undectable status, there's a very high % of folk who gain it back again if they need to dose increase again so its really a low risk move to dose reduce and the upside is significant.

Many CML patients, if not most, take far more TKI than they need.

If you have been undetected for a year, you should be able to gradually reduce your dosage, to as low a level as possible, without requiring any additional testing.



There’s no way I’d reduce without additional testing, what if cml  was to progress ? 

Kathyp, try to realize that you are still taking a very meaningful amount of TKI; if your CML was to return it isn't going to go anywhere very quickly.  I also recommend beginning each  dosage reduction six weeks prior to your next quarterly test.  

Hi, my consultant is testing me every month for now. So I’ll go with what he says .thank uou

Sure, of course you should!

I think buzz was considering cases where the patient needs to pay for bcr/Abl test ($1000 usd where i live) and was offering another way forward in case cost was a barrier.

Anxiety isnt rational, however we wanted to say that your risk minimal in the hope it puts your mind at rest.

"What if the cml comes back?"
Its a big question but understand what 'coming back' means in this context. It would be a very gradual and small drift away from undectable which is reversible in many cases. It would not be like 18 years ago with sky high blood counts and all that could mean.

Hope you will feel better about the dose reduction in time. Its great that you have a consultant that's supportive of dose reduction.

EvaH, no, I meant it exactly as stated.   It has nothing to do with cost.

Hi Buzz just out of interest are you a dr/ consultant ? 
why would you not want extra monitoring while reducing meds?  

Kathyp, no I am not a Dr. or consultant.  However I did keep track of everyone who attempted TFR and/or dose reduction, including my own gradual dosage reduction and successful TFR, over the last 5-6 years on the U.S. LLS discussion forum.  All were highly unlikely to lose their undetected status while gradually reducing their dosage, but if you should, your CML level is unlikely to go anywhere quickly as you will still be taking a substantial amount of TKI.  Of course you are welcome to test as often as you want.