It is a bit random for actual information, but there are several people in the past year who have maintained an undetectable result for several years; one patient was 4.5 years, another 2 years, I would have to go through the group and read over the posts for accurate information.
My point in all of this is, I believe as long as there is no cure found for this disease I do not believe any of us are truly 'safe'. For want of a better word. Although the odds may be in my favor, I entered my choice to stop the TKI because of the severity of the PH fully believing at some point I would have to return to the medication.
There is a vast amount of information known and more is learned every day about CML, but I also believe there is much unknown. The questions go on and on for the response differences, the dosage, the effects, and our overall on and off the TKI's.
I believe stopping a TKI is a crap shoot. You might hit the jackpot and you might lose your a$$. To my knowledge there is no treatment out there for the deep rooted stem cells, perhaps they hang about lazy for a while then decide it is time to wake up. Maybe they never wake up. I am thankful every day I do not have to take a TKI, but I also understand that could change in one day/test result.
I almost wish now I would attempted a low dose as Scuba is doing (disclaimer: this is not his ultimate goal), it would have potentially taken some of my unknown away. I rarely think of the CML, but when I do it can be instantly uncomfortable and cause a panic attack because of the unknown. When I read of a person, as I did last week who was undetectable for 4.5 years and is now at the point where a TKI is needed I am reminded once again, there are no certainties and definitely no guarantees.