DX July 2014 and lurking here for the past year. I have been on Sprycel 140mg since DX and aside from a few side effects that come and go (the biggest one is fatigue and muscle/bone pain), have been doing relatively well and consider myself fortunate.
In my recent test (7/6/15), I went from 1.645% (p210 transcript b2a2) to 2.2% (I had gone from 56.6% to 1.645% previously in the 6 months prior). My onc is considering a few courses of action as he indicated he would have expected me to come in under 1% on this recent test. These options are stay the course and re-test in a month, consider switching to another medication or possibly have me see a CML "guru" at another cancer center in the state.
My onc is relatively good although he tends to try and oversimplify things somewhat for me where I'd prefer the details. He's telling me not to panic, which I am trying not to do but it's easier said than done given I had this feeling I was doing well. What I am struggling with is understanding whether this just a blip or whether this means the CML may be mutating/resisting and I am facing a real setback/relapse here. I am not even sure of the right questions to ask because I really had not been expecting this. I am trying to be optimistic and view this as a minor inconvenience but want to be realistic that it could mean something more serious. I'd appreciate any feedback from others that may have had similar issues in the past.