Hmmmm questioned my Oncologist bout reducing dosage when I get low enough, but his thinking is if you are handling the med and not having any major side effects then why mess with success. Says maybe way down the road we can think of it if levels are holding. But he is thinking a long time. I am thinking why would I risk a relapse if things are going along well. Sorta like poking a sleeping bear, you could get bit.....
More than 60% of patients who are "eligible" to stop taking their TKI and try cessation (i.e. two years PCRU) elect not to for the same reason you wrote above (M.D. Anderson, pers. comm.). It's human nature to avoid change if change can be avoided. Even when an expert (Oncologist) tells them it's o.k. to try - they tell the expert - no. Something else must force them to make the decision for them.
The fact remains that no patient who was in MMR/CMR for year or more who tried cessation progressed. None. The one patient who is often cited as progressing had a co-morbidity (very sick patient in other areas) and relapsed with a different disease - not even CML.
Reducing dose to try and minimize side effects while at the same time monitoring your PCR for increase (monthly tests) is a very safe thing to do. Oncologists who are not expert researchers in the field will not tell you this until they are told that this is the new protocol and becomes part of the NCCN guidelines and they are "forced" to change.
During the most recent ASH conference, a panel discussion on dosing, cessation and other related matters focused on the need for more customization and individualization in treatment. They discussed how one size does not fit all. Strange that doctors insist that full dose forever is the only way in light of all this new information. It's not their body or side effects. No risk in telling patients stay the course.
Still - the patient - you - has to be comfortable with trying something different - especially when your doctor does not support your desire to try.