After 6 yrs of TKI, all 4 of them, I asked oncologist if I could go off Tasigna for a while to see if I felt any better. Surprisingly she agreed to a "drug holiday". That was Sept and my PCR was .067, CBC and other blood tests all normal. By Dec PCR had gone up to 70%, blood sugar had returned to normal (Dr. finally admitted Tasigna dramatically affects blood sugar) and my hair stopped falling out. These were the only 2 side effects that went away while on drug holiday. All my blood test, including white count, remained within normal range during that 4 months I was off TKI even tho PCR rose quickly to 70 %. I still felt just as lousy every where else, so will assume it's just the way my body is and will look at other methods to deal with it. All total I was off TKI 4 mo. I've been on Bosutinib since Jan and it frequently makes me so very nauseated but I will keep trying it. Haven't had PCR yet but assume it will come down quickly. regular blood test every 2 weeks and they are normal so far.
I had to get this experiment out of my system and put a lid on any hopes I could go off TKI, at least until they develop something else that will kick every one of those pesky little devils out once and for all.
Acceptance has never been a strong attribute of mine but I am getting better and better the older I get and CML has been a good teacher.