8 replies to this topic

[Melanie]

Well here's a good example of how the PCR test can vary in a very short time. Had a kit sent to MD Anderson right before my appointment so we could discuss results while there, since I travel from Arizona.That test was taken on 9/13. When I got there, I was told there was no results because the sample had degraded so they would just do another one while I was there. That was on 9/26. Today I get the results from "both" test. I guess somehow they were able to get results from the first one anyway???

 

Regardless the 9/13 was 0.16% and the 9/26 was 0.31%. Thirteen days and there's quite a difference, especially since my previous MDA result was 0.07 in June. Not liking the trend here. I would say that's a log increase... Here we go again! Any thoughts and words of wisdom on this?

[gerry]

What were your results prior to 9/13? You need to see a trend. Both results were technically above .1% which is MMR. You've reached CCyR which is the important milestone.
This is an earlier article, so doesn't cover off too much on the second generation TKI, but still interesting. :-)
http://www.bloodjour...so-checked=true

[Trey]

Melanie,

Please remind me if the previous PCRs were done at MDA.  MDA results can often vary from other labs. 

 

I would trust the person who said the first sample was degraded rather than trust the actual result published.

 

Was the latter PCR done the same day as the blood draw?  That is rare so the result could be different just from that issue.

[Melanie]

Gerry,

 

2016 PCR results are:

 

Jan - 0.08 local lab

Mar - 0.04 MDA lab from bone marrow

Apr - 0.14 local lab

May - 0.195 local lab

Jun - 0.07 MDA lab PB from kit sent in

Jul - 0.03 local lab

Sep 13 - 0.16 MDA PB from kit sent in

Sep 26 - 0.31 MDA PB there at MDA.

 

Thanks for the article. Although CyCR is the gold standard, there's still discussion on what it means when PCR moves up or down, especially in us turtles. On 9/21/15, chromosome test showed one positive for PH+ plus der(1;7). Interesting enough in Mar of 2016, the chromosome test came back negative, but it was only 14/14 and no der(1:7). Since I didn't get a bone marrow at this visit (first time ever!), these test weren't ran.

 

Trey,

 

You can see the PCR's from above and of course I have results from previous years too, but I thought I was pretty stable and always trending down since reaching CyCR in Aug 2014, except for that one positive chromosome in Sep of last year.

 

It was Dr Cortes that said the 9/13 sample was probably degraded, something about the enzyme not being good enough. Evidently, they ran it anyway after they had called looking for it. The lab had told the team that they didn't have results from this draw at the time of the appointment on the morning of the 26th.

 

I had a regular blood draw for CBC and chemistries on the evening of the 25th. Then after my appointment on the 26th, around 11:00 am, they did another blood draw for the PCR test as well as another round of CBC and chemistries. Even the numbers for the CBC were really different between the two draws. You've always said how different they can be even on the same sample, and boy were you right!

 

Can hardly wait to see what my insurance says about all these test! I see a big bill headed my way!

[gerry]

Hi Melanie,

I was on my phone when I first responded, so didn't see the info in your footer. I'm guessing they increased the dosage in July due to the fluctuations and though initially the PCR went down, it is now back to doing slight increases. What does Dr Cortes say about it, I'm assuming his is your doc? 

[r06ue1]

If Bosulif is no longer working for you, you might qualify for the ABL001 trial.  

[Melanie]

I haven't heard back from Dr Cortes yet. Chances are, he'll want to stay the course, which is fine. It's a tricky balance between enough TKI to control the CML and also not totally tank my numbers. I think I was just in too much of a hurry to lower my dose to see if it would be gentler on my numbers. It was, but it was also gentler on the leukemia. For now, we can manage the low numbers with different treatments, so I need to be patient and stay MMR for a much longer time before playing with the dose. For this turtle anyway.

The ABL001 trial is maybe an option. Not sure how it affects pancytopenia. I love how there are always options!

[scuba]

Melanie - Are you normalizing your results to one standard? MDA reports their PCR results using M.D. Anderson scale. Your local lab uses International scale. MDA values will always be higher than IS. MMR therefore is about 0.28 MDA.

 

Dr. Cortes will very likely want you to stay the course and see if a trend develops. I assume you have zero blasts in your CBC report?

[Melanie]

Thanks, I agree with you Scuba. No, there were no blast cells. Still waiting to hear back from MDA.