HI Susan -
You wrote, "My doctor told me today that she had a man who was PCRU, and doing well. He did not like the puffy eyes because he felt his looks were important in his line of work. She let him cut back on his dose, and he lost his reponse".
Questions I would ask your doctor:
1. How log was he PCRU? (was it NINE years?)
2. Did he take Interferon prior to starting TKI therapy? (Evidence suggests strongly that those who had Interferon first have a much higher chance at cure).
3. When he restarted his therapy after losing response, did he re-achieve PCRU?
Question 3 is the real key in my opinion. Everything I have read suggests that when a patient stops TKI therapy after having achieved PCRU and then loses response, they regain it quickly as soon as the next test. I don't recall reading anywhere, a single example, where a patient who had been PCRU, loses response by stopping and then progresses even with renewed TKI - not a single case. So that gives me HIGH confidence that even if a PCRU person stops therapy and loses PCRU, they will regain it again by resuming therapy. And the good news is that 4 in 10, maintain response. That is why so many people with Dr.s blessing are trying the 'stop TKI' path to test the idea. The risk is low.
In your case, I understand how you feel (the risk is not zero after all, just low) - but I write these comments because of the other health issues you cited. TKI's are nasty drugs. Your body is working hard to get rid of it all of the time. Your liver, Kidneys and other organs are affected. And you have low platelets, which in later life is especially important to have handy.
So in your discussions with your doctor, ask the 3 questions above and inquire about what health "benefit" should you expect if you did indeed lower your dose or even stop. Energy level?, muscle cramps?, organ function? etc. Better quality of life?
I said you are "cured" and I really believe that. But peace of mind is important - and you should only do what you feel comfortable doing. I just wanted to add that there are folks here that are with you if you decide to go down the less is better route. Trey went the less is better route and so far has had a great result.
Regardless your choice - you are my hero for blazing the trail and proving that a long life awaits us despite this disease.
Drink a lot more filtered tap water - that should help with the Uric acid levels. And take vitamin C (1,000mg).
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"