I had a good 12-month follow-up with Dr. H. Khoury at Emory Winship yesterday - I've been fortunate to have a recognized CML specialist in my back yard and I'm continuing to work on building trust under his guidance and care. The only issue I'm having at this point is that he's very big picture and I'm insanely detail-oriented, so we politely clash a bit in our appointments when I ask questions that he really doesn't think I need to be asking. Anyway, we had the following Q&A that left me puzzled as I walked out; just wanted to get thoughts/reaction from other CMLers given that we're all seeing different docs with varying levels of knowledge and experience. BTW, I am so incredibly grateful for Dr. Khoury and he tries very hard to get me out of the weeds and to see the big picture. Oh, and he's a runner as well - so we have that vibe going on. And lastly, I know that the TKI is doing the real work here, so all of this really is just me wanting to know/validate everything I've learned about CML. Anyway, some interesting Q&A follows:
Thoughts on PCRU(ness) and dosage reduction
Me: What's the max log reduction that your PCR test can reliably detect?
Doc: Not exactly sure, but we aren't on IS and we use our own baseline. You're undetectable through our PCR, and that's what we care about.
Me: Yeah, but is it -3.0, -4.0, -4.5? Doesn't that matter?
Doc: Don't worry about it ... won't change a thing. This is a great result. If you hold this response, then we will reduce or stop Gleevec all together in April 2014.
Doc: Yes. I have a patient who stopped Gleevec and is still undetectable after 1.5 years.
(My commentary: He was pretty matter-of-fact about PCR sensitivity and dosage reduction/elimination. He said multiple times that I should consider myself operationally cured given the test results, but aren't there still a few million Ph+ cells swimming around waiting to bump into each other and potentially cause problems/mutations, etc.? And what about the CML stem cells causing this mess in the first place? How should I realistically think about the status of bone marrow at this point?)
Thoughts on speed of response
Me: So, my understanding is that 12-month undetectable on standard-dose Gleevec isn't common, so I'm really just getting lucky that the first-gen therapy happens to be working for me ... this is seen more often with Tasigna and Sprycel. Correct?
Doc: Actually, 70% of my patients who started on Gleevec made it to undetectable by 12 months.
Me: Huh? That's counter to everything I've learned over the past year.
Doc: It's a very expected result. [Smiling at me to let me know that HE's the hematologist/researcher, not I.]
(My commentary: This stat did not sound correct to me at all and left me very confused. NCCN guidelines state that optimal response is CCyR by 18 months [where dosage increases are recommended protocol if not CCyR by that point]. If that is defined as optimal, then how could 70% of his cases far exceed that optimal expectation by reaching PCRU on first-gen? It just sounded wrong and I was worried that he was saying that to keep me confident that "this is usually how it goes, even on Gleevec". Has anyone ever heard of a stat like this? Now I'm wondering if he was thinking specifically of CCyR when he made that statement, because he has told me on multiple occasions that CCyR is *really* what matters in terms of event and progression-free survival, not MMR.)
Side Effects and Gleevec "holidays"
Me: So, I have this lower abdomen pain - it's a bit of a mystery. Do you think it could be caused by Gleevec?
Doc: We hear about so many potential side effects, so we just aren't exactly sure. Let's stop Gleevec for 4 days and see if it goes away. That will help us rule it out.
Me: Uhhhhhhhhh, that sounds very scary to me. I'm not comfortable taking 4 days off from Gleevec.
Doc: It's not a big deal given your response. We do it with patients all the time.
[After further discussion, we decided not to do this - because I think there's a different root cause.]
(My commentary: I didn't realize that short Gleevec holidays could be done in such a matter-of-fact way over the first couple of years, regardless of response. Frankly, I'm scared silly to skip a dose, no matter what the side effects are. Is this really safe to do?)
Do others have similar interactions and have received similar guidance?
Thanks for your feedback...