John - Thank you very much for the reply as I sometimes post and never know when I will get info back (it's like fishing, lol).
I have been treated for almost exactly 2 years (two years ago yesterday I was diagnosed). My PCR has never reached MMR and I have switched from Dasatinib to Nilotinib. PCR currently is 0.36 down from 1.2 when I did the switch. So CCyR again and hoping for better in my next exam in three weeks.
You are correct that Myeloid Sarcoma or aka Chloroma is most often seen in AML (and even there in less than 5% of cases) but it does exist in CML. It is known to show up in CML BP and AP more often and very rarely (less than 0.2%) in CML CP. There is scarce literature but does exist.
The concern is that if it were to show up then it is the equivalent of CML BP no matter what the blood counts say. In other words you can have CML CP in MMR and if a Myeloid Sarcoma shows up it is considered to have gone extramedullary into BP. This is not something that you will find an abundance of literature in but something to mindful of if you feel any pain and or growing areas.
Naturally as you said it can be just a side affect of the TKI but as many on this forum are aware this can be a mental battle as well to keep things in perspective. So to answer your questions I am in CML CP thank God and in CCyR. The pain I described comes and goes and I currently cannot pinpoint it as I write this. How long has your pain been coming and going? A bit of good news I think is that I don't believe a MS would grow and subside without intervention.
Again thanks for the reply. Take care.