No news is no news.
My January appointment at UCLA came and went. My PCR ticked incrementally down from 3.7% IS in August 2017 to 3.6% IS in January. So, not really down by leaps and bounds. A bit disappointing progress for an additional 5 months on full dosage (500mg) bosutinub. Progress is progress, however slow, small, or incremental it may seem; I'll take it. I again chose to delay bone marrow transplant preparations, in favor of continuing on my current treatment.
Chose is really the optimum word there, as by choosing to forgo a transplant at this time, I am essentially going against the recommendations of my doctors. I've found more peace with the decision, and am committed to continuing TKI treatment until or unless that option is no longer feasible (like, if my PCR starts going up.) My UCLA doctor has not contacted me to make a follow-up appointment, so at this time there are no impending trips to Los Angeles in my foreseeable future which, quite frankly, makes me ecstatic.
I have not had another PCR test since January, but will firmly suggest/demand that my regular oncologist order one when I see him again in May. I have had subsequent FISH test, which came back higher than the previous - which is decidedly NOT GOOD - but not yet cause for alarm. My FISH in October 2017 came back with 20% cells positive for the BCR/ABL1 translocation. FISH performed in March came back with 26% positive. The lab technician noted "There is no significant change from the previous studies, when the same abnormality was observed. This result is suggestive of persistence/recurrence of the abnormal clone." All other blood test results were normal.
So that's how I live. Hope for the best. Do those things that are within my power to tip the scales in my favor. Live life. Try not to sweat the small stuff. Try not to sweat the big stuff, either. Keep on keeping on.
