I was wondering. Literature states that there is a minimal chance on TFR when there is no MMR after 24 months. Can someone confirm this?
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No MMR after 24 months and in TFR
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Each persons case is unique and not everyone will get TFR but with that being said I think it can take a very long time to be at lower levels maybe a decade or 2 and to say that it’s not possible just because you don’t reach MMR by 24 months seems like a line in sand again. CML doesn’t give a crap about MMR and decimal places to some degree. You either respond well or you don’t. Some are quicker than others I wouldn’t stress over it who knows you may be a candidate one day. Or treatment will improve in the next 10 years (imagine how good it’ll be in 10 years seeing how good today’s treatments are)
It took me 27 months to reach MMR and that was after switching TKI's 10 months before reaching MMR. I was concerned and then starting reading in many places that CCyR (<1.0) is a safe place to be and provides similar survival to MMR. I try not to think about it much now. I learned to be content considering this used to be a fatal diagnosis prior to TKI era. I am ok taking meds for life because I get to live my life is the way I see it. Of course I would rather get to TFR if I get a deeper response for a sustained amount of time but Iiving at all is a blessing. I would like to work my way towards TFR by lowering dose every chance I get in the future. I figure by doing this even if I don't get to TFR I will be taking the lowest dose and help aleviate any adverse side effects.
I hope you get to deep MMR and eventually TFR.
I recently read a post on fb of somone celebrating 19 years post diagnosis after having tried a couple different TKI's. This is encouraging to me especially because there is even newer treatment being developed for those who do not have great success on TKI's.