9 replies to this topic

[LivingWellWithCML]

Hi everyone,

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....

Dan

[CallMeLucky]

Hey Dan,

I'm not qualified to answer from technical aspect, you have some good questions, so I'll just tell you what my doctor does with me.

PB vs BM - I had BMB at dx, then a BMA at 6 months.  I was scheduled for another one at 12 mo, but based on my MMR status at 9 mo, my doctor opted to skip the 12 mo BMA.  My 12mo PCR wound up being negative.

Taking blood in advance - I would love to, but I have to travel to my doctor and if I wanted to do blood ahead of time, it would mean two trips instead of one.  So for that reason I just do the one trip, she examines me, looks at CBC and then says she'll call with FISH/PCR.  I get the results a week or two later.  If I have questions I can call or email or discuss at next visit.

TKI concentration.  I never had it done, and as far as I know it is not necessary if you are making good progress.  If you are not making progress then I guess it can help answer some questions about why you might not be doing well.

At 3 mo I think you should be looking for good blood counts, discussing side effects and it would be good to see some downward movement in the FISH indicating you are getting some cytogenetic response.

Best of luck....

[Susan61]

Hi Dan:  Lucky explained things very well.  When I was first diagnosed I had to have the BMB every 3 months, then I eventually got to the every 6 month regimen.  Once I reached a cytogenetic remission, they stopped the BMB and just started to do a PCR on me every 6 months. I have been doing just a PCR test now since my results came back PCRU in 2003.  As a matter of fact I am due to have my PCR done next week.  I only see my Oncologist every 6 months, but I do regular blood work every 3 months with the PCR on the 6 month blood check.

     I always made a list of all my questions to ask at my office visit in person, so my doctor could sit right there to explain things to me.

     I hope some of your responses helped.

Susan

[LivingWellWithCML]

Thanks.  I do find it interesting that Lucky's receiving more BMB/As beyond diagnosis.  I received a BMB/A at diagnosis and I'm being told that we don't need to do one again (assuming the response is favorable).  Dr. Khoury was one of the authors of a Nov 2010 study comparing PB and BMB and they concluded that PB was good enough to monitor response without the need to keep doing BMBs.  Looks like one of their key conclusions is that PB FISH correlates very closely to BMB Cytogenetics (r = 0.89 is a very strong correlation in my book).  But is this good enough?  Does this really mean that 0% FISH = 0% BMB Cytogenetics?  Or should one push for a BMB at 6 months just to make sure that the marrow is clear and blasts are not present?

http://onlinelibrary....25678/abstract

Thoughts?

Dan

[Trey]

Most Oncs should use the NCCN CML Treatment Guidelines, unless they are very familiar with treating CML.  These guidelines suggest -- for someone diagnosed in Chronic Phase CML -- a BMB at diagnosis and at 6, 12 and 18 months or until CCyR is achieved:

http://www.nccn.com/...nes/pdf/cml.pdf

If someone is diagnosed in Accelerated Phase or Blast Phase, BMBs should be done very regularly.

So your Onc seems to be expecting a good TKI response, and if you respond to TKI drugs "quickly" then he might be inclined to skip the 6 month BMB.  And as long as you make very steady treatment progress and achieve CCyR (zero FISH) by one year, then no BMB is necessary at the 12 month point.  The caveat may be that if you started with high risk factors, then a 12 month BMB would still be a reasonable approach.  The TKI drugs have changed the treatment timelines, but all Oncs do not apply them in the same way.

Using peripheral blood for most tests is fine after diagnosis unless there is a reason to do otherwise.

I always try to have my blood drawn approx 6 weeks in advance of my appointment so the results are available at the appointment.

[LivingWellWithCML]

Yup, I saw that in the guidelines, which is prompting my questions.  Appreciate the feedback, Trey - thank you.

A few follow-ups, so I can make sense of all of this:

• CCyR (zero FISH) -- Is 0% FISH on peripheral blood considered an accurate measure of CCyR, or is this ONLY considered accurate against a bone marrow sample?  This is where my question/confusion/concern is.
  
• What do we constituent as "high risk factors" for chronic phase at diagnosis?  I had 98% FISH and 0.2% blast as measured against my BMB/A at diagnosis in late March.  No symptoms (except for slower running performance), spleen was fine, but WBC was 155,000.  High risk vs. low risk chronic phase still confuses me.  I like to think that I was characterized as "early" chronic phase based on the blast percentage at dx, which is lower risk (maybe??).
  
• That's wise re: getting blood drawn in advance of the appointment.  I plan to call Emory to align everything and reschedule my appointment so we'll have the results.  I just don't see a need to go down there just to look at CBCs alone ... especially since CBC and CMP are being checked with a local oncologist near my home.
  
• Is it fair to ask Emory where the FISH/PCR testing is being done?  Do folks actually request specific facilities to get the most sensitive/accurate testing?  Any recommendations there?
  

Dan

[Trey]

Peripheral FISH is fine but should be correlated with PCRs as a double check of accuracy.  From what you have said, I doubt you had any high risk factors, but ask your Onc.  I would assume Emory does their own FISH/PCRs on site.

[janner25]

Hi ~

I never had a BMB at dx - just the PCR (which those on the board know put me into a panic of questioning - do I really have it???).  At my 6 mos visit, I had my first (and hopefully last), BMB.  Dr. said that as long as the BMB came back zero - or close enough to zero (I was .002%), then I shouldn't need another BMB.  I would be measured using PCR via PB and unless my PCR numbers go up, I shouldn't need another BMB.

Good luck .

[LivingWellWithCML]

This is really helpful.  Gosh, it sounds like a 6-month BMA (and BMB?) is in order to do marrow-level cytogenetic analysis with a great deal of certainty.  But I'm pretty sure that Khoury isn't planning on it ... mainly because of his confidence in PB for monitoring (I mean, he IS one of the authors of the PB vs. BMB research paper).  However, I might ask for it to be safe and stick to broader protocol.  In any event, I don't think it's needed at the 3-month point.

I've already called Emory to try and get my blood drawn now since FISH/PCR takes ~ 1 week and it's done on-premise.

Thanks for all of your input!

Dan

[CallMeLucky]

I think the question will likely answer itself, especially if you get the blood drawn before hand.  If you are FISH negative, or close, at 6 months (and PCR corroborates) then it is unlikely the BMA would show anything different and therefore not necessary.  If you are not making good progress then a BMA would be in order to understand why and I would expect the doctor to feel the same way regardless of any theories he supports.