Posted 19 August 2013 - 05:13 PM
Pat - Good news indeed. For those who respond to TKI therapy with a quick CCyR (FISH = Zero), dose reduction is definitely a viable way to maintain high quality of life, minimal side effects and still have lifelong disease control. It certainly has worked for me. It was somewhat comical that I had to urge, convince, beg my doctor to let me increase my low dose just to test if I can get to PCRU. He wanted me to just stay at 20mg and live this way.
My ultimate goal is to stop taking Sprycel altogether. I am on 40mg only until my next PCR test, then back to 20mg for a maintenance test (i.e. see if I can keep PCRU while on a renewed lower dose). I am borderline PCRU now (MMR like yourself). If I find that my next PCR there has been little change (no PCRU or log drop), then I'll still go back to 20mg and let that be my functional dose until something new comes along. I am getting close to the end of my experiments.
Personally - I do not understand why Oncologists keep their patients at 70-100mg of Sprycel after they achieve MMR. Sprycel is toxic - long term effects are not known yet (hint of bone issues/Osteocyte issues are emerging). Dr. Cortes believes that the lower dose the better if it works in order to avoid severe side effects and be able to stay on treatment.
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"