Hello there,
My diagnosis was also in December 2016, with CML % count so high that even the lab commented: "unable to provide accurate number". Let's not talk about my white blood counts!
Funny, even with all those jam-packed CML cells and off-the-roof white blood tallies, the only actual symptom i had of the disease was a splenomegaly.
Thankfully, those dark moments of my life are now far behind me.
Above said, i never once want to forget that faithful day back in Dec 2016. In fact, i now celebrate my birthday on the day of my CML diagnosis as it marks another year of survivorship and a personal reminder that CML is here to stay. Sad, huh? Not for me, because i don't want to continue to see CML as an illness that translates into mental weakness and doubts. Hence, i choose to see it as a rebirth of my life after a life-changing trauma. Besides, way i see it; for me to get better, i have little choice but to quickly and fully accept what is happening to me.
All right, enough with the back story of my life!
To some details on my treatment therapy and response's rate; I'm currently on nilotinib/ Tasigna 300mg twice daily. Not the same class of drug potency as your dasatinib/ Sprycel, but my PCR tests yielded enough satisfactory results to be contented in the last 12 months - according to my hematologist.
My PCR IS results:
Day0- Highly remarkable
Day29 - 38%
3Month - 0.98%
6Month - 0.059%
9Month - 0.039%
12Month - 0.032%
Commentary to my 9th to 12th PCR - not so glamorous compared with my former ones which i speculate has a lot to do with the reappearance of my hyperthyroidism. The latter has caused all sorts of havoc to my sleeping and digestion patterns while it lasted. Now with my TSH level normalized again, i hope to see some much-desired improvement to my PCR reading in two months time! Either or all, these days I am no longer bothered by the slight fluctuations in my PCR results' trend. WHAT for? As long as i continue to feel great, live well whilst doing everything right within my willpower in the management of my CML (i.e., TKI adherence, balanced diet and exercise) and still enjoying all the best things in life with my loved ones, then nothing else mattered. Or at least, until my hematologist started to voice his concerns over the results, I decide not to waste my precious time of my day/night worrying about it!
More over, back to your post- i can definitely relate with your 12Month journey and i also think your doctor might be on to something when he implicated irregular sleep patterns may be affecting your overall result. I.e. lack of sleep may affect the body's TKI absorption and release etc,.
Wishing you all the best with your CML journey.
Best Regards,
Ellie.