I will be seeing a CML specialist for the 3-month check in the next couple of weeks, and I have some questions on the latest & greatest recommendations regarding protocol -- what to expect, what I should consider requesting, etc. Any feedback would be greatly appreciated! For reference, I have reached 3 months on Gleevec 400mg:
- Peripheral Blood (PB) vs. Bone Marrow Biopsy (BMB): I have been told by Dr. Khoury at Emory Winship in Atlanta that all of the genetic testing can be done exclusively on PB and there will be no need for another marrow biopsy/aspiration -- he also published a research paper supporting this approach for monitoring. His plan is to take a "baseline" PB FISH/PCR at 3 months (i.e., I guess that the BMB FISH/PCR from dx cannot be used as a baseline??), then compare with PB FISH/PCR at 6 months (and beyond, obviously), and to do all of this with PB. In terms of cytogenetic analysis, though, are they able to use PB to look for the actual presence of blasts and other potential progression-related signs at the blood level? I don't necessarily want another BMB if PB is a solid measure for monitoring response, nor do I want to be crippled by worry if PB can't look for these things. Are there still differing theories on whether PB or BMB should be done and when, and what are others recommending? I would be curious to hear of others' experiences.
- Taking Blood in Advance: I am considering pushing Emory and asking for them to take my blood now, so we can have some or all test results back in time for my appointment. I have already been through 3 months of Gleevec (as of yesterday), so is this a normal request for a more-productive appointment? Just wondering if others who hit their 3, 6, 12, 18 month milestones just show up to give blood and talk to the doc, then split and wait for a call ~ 2 weeks later. Oh the agony of waiting. Thoughts?
- Measuring TKI Concentration in Blood : I've seen that some facilities actually measure this, which is a very helpful data point to ensure that the 400mg dose is generating the right level of concentration in the bloodstream. Are others getting this done at their 3, 6, 12, 18 months milestones? Is this considered standard?
- Other Considerations : Anything else I should be thinking about at the 3-month milestone? Obviously we'll look at CBC and CMP numbers, but what else would be beneficial above and beyond what I've mentioned?
Thanks so much for the insights that other CMLers like you all provide....