Hello there,
I'm terribly sorry to hear about your bone pain predicament. I experienced similiar pain with sporadic itchiness (particularly in the stretch of bone of my shins) which thankfully only lasted a couple of days after starting my TKI. My physician looked towards nilotinib as the prime suspect. For me, it helped at the time when the pain started to take up brisk walks whenever i got the chance and taken up on a complete change of lifestyle and diet. For i.e more excercise and increase of dietary intake of plant food rich in protein, Vit E and A to combat inflammation in general.
To your other concern about your 6month PCR result; i read the "PCR-primer" which davewell has kindly shared with me; says that it is ideal to achieve a 0.1% or less of Bcl-Abl transcript by the 12month timepoint whereby the ELN defines it as an optimal response to treatment. If not, then your clinician will discuss with you other TKI options, not necessarily involving a BMT, that may be more optimal for you to help get the numbers down. That said, i'm certain that there are plentiful of cml veterans here on this forum who will tell you that your ability to reach the ELN's or IS's defined % reduction at any given timepoint is just as important as your tolerability level of a TKI's adverse side effects. And these same experienced individuals will tell you that so long as your numbers continue to drop significantly enough at each timepoint (which yours appeared to be) and you're well tolerated to your current TKI then why not wait it out a little before talking about the "switch" or a BMT.
Personally, i have my initial concern about my own PCR result. Mine was a 3month figure which i also posted on this forum, but since then i've learned to go with the flow while at the same time fight this disease as hard as i could every day so that i have no regrets!
(PS. A couple of days ago, davewell has posted me an info link to read about understanding my PCR result and its corresponding timepoints. http://www.cmlsupport.org.uk/sites/default/files/qrt-pcr-primer.pdf)
Best of luck with your cml,
Ellie.
