Posted 22 September 2016 - 08:56 AM
If you lower your dose to 10mg, will you get more frequent testing? Just want you to be safe.
I just heard back from my doctor and he's fine with me lowering dose to 10mg...but not 20 mg every other day as I had wanted to do. I'll have to wait until I run out of 20 mg tablets as it is near impossible to split the already tiny pills. And the 10mg is a special order.
I won't require frequent testing even on reduced dose. When I stopped Sprycel altogether to try cessation, I never lost MMR even after nine months - well past the six month window. My history is why my treatment is customized. CML can be a very slow disease when in chronic phase and is that way for me (blasts < 3%; zero even better, my blasts are zero). After six months, if my PCR were to climb I would certainly catch it long before it would become an issue. And I would still be taking 10mg at that time.
I fully expect 10mg to be sufficient to keep my CML where it is. I just don't need much for it to work apparently. Of course I am doing other "nutrition" based things that I am fairly convinced helps what little Sprycel I take do its job.
I actually very much want to try cessation again, but then I would have to be tested every month. Taking Sprycel is almost worth not having to drive/park/wait at M.D. Anderson! When my doctor agreed I don't have to be tested but for every six months, I rejoiced just on that fact alone (no driving there).
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"