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#1 Silvertabby

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Posted 13 September 2015 - 01:02 AM

I was diagnosed with CML in September, 2013 and have been on Gleevec 400 the entire time.

My first few tests (Dx, 6 weeks and 3 months) were done at one particular lab, then the following tests every 3 months through March, 2015 were done at a second lab due to Insurance coverage problems.  But my last test was done at the original lab because my Onc prefers that lab and my new insurance will cover the lab.  Anyway... the test results at the 2 labs are given differently.  

 

Lab 1 gives results as IS % and BCR-ABL1/ABL1 Ratio.

 

Lab 2 only gives BCR-ABL1/ABL1 % (IS)

 

Lab 1 Results:  9/29/13          IS %  26.5%                  BCR-ABL1/ABL1 Ratio        0.5200

                         11/25/13        IS %  22.9%                  BCR-ABL1/ABL1 Ratio        0.3068

                          1/3/14           IS %  11.23%                BCR-ABL1/ABL1 Ratio        0.082

Lab 2 Results:    3/24/14                                              BCR-ABL1/ABL1 Ratio (IS)   0.312

                           8/4/14                                                BCR-ABL1/ABL1 Ratio (IS)   0.213

                           10/22/14                                            BCR-ABL1/ABL1 Ratio (IS)   0.237

                            3/16/15                                             BCR-ABL1/ABL1 Ratio (IS)   0.159

 Lab 1 Results:   6/29/15         IS %   0.58%                BCR-ABL1/ABL1 Ratio        0.00512

It also stated on the latest report:  that MMR had not been achieved.  Does that mean that

the ratio is not considered for MMR only the total percentage?  It was also 48 hours from blood draw to testing and the report stated that the sample was suboptimal.  My Onc is in Fairbanks, AK and the blood has to be sent to Seattle, WA for testing.

 

Here I was thinking in March at 18 months I was very close to MMR only to have the latest test

tell me I wasn't there yet. I am confused and disappointed.

 

My next appointment is on September 22.  What should I ask my Onc about the test and should I be concerned?    


Dx - 9/2013. IS QRT-PCR - 26.5
Gleevec 400 - 10/2013 to present
CCyr - 3/2014
MMR - 9/2015
PCRU - 12/2015
.01525 - 3/2016
.024 - 5/2016
PCRU - 8/2016
.015 - 11/2016
.015 - 3/2017
.015 6/2017
PCRU - 9/2017

God is in control. I will trust Him.

#2 Lucas

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Posted 13 September 2015 - 05:07 AM

Hey, silvertabby, to reach mmr you need to be 0.1% or less on the international scale. The resultado that matters is the IS one.i think you should talk to your onc about a tki chance because it seems like you are in a plateau. Good luck.

#3 Trey

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Posted 13 September 2015 - 09:29 AM

The IS percentage numbers should be the most representative of progress, especially when comparing PCRs from different labs.  Raw ratio numbers are generally only useful compared to each other, and only from the same lab.  All your IS percentages are above .1% IS which defines the standardized 3 log reduction and MMR, so you have not achieved MMR.  The raw numbers cannot equate to a standardized MMR, only to personal log reductions, and must be from the same lab.  Even so your personal log reductions do not show MMR.

 

To further confuse the issue, all your lab results use the term "ratio", which are not the same as percentages.  The percentage is 100 X ratio.  So your most recent PCR in ratio was .00512, and X 100 = .512 %, which correlates closely to the IS .58%  An IS factor changes the raw percentage slightly, so that would make sense.  The lab 1 ratios appear to be actual ratios, but the lab 2 numbers say they are ratios, but appear to be percentages.  If they were ratios the percentage numbers would be 100 times higher, so the last result from lab 2 would be 15.9% if these were ratios.  I doubt that your last lab 2 PCR was 15.9%, so I think the lab 2 "ratios" are actually percentages.  As you see, PCR results are made more confusing when labs do not use proper terminology.  You should ask your Onc if my understanding of your PCR results history and explanation is accurate with regard to your lab's use of ratio vs percentage terminology on your reports since I am trying to interpret data which appears to be mis-labeled (but don't be surprised if the Onc doesn't know).

 

Since your last PCR report said the sample was suboptimal, that result would be suspect.  The next PCR will hopefully be done properly.  Find out if the lab in Seattle only does PCR tests on certain days, and try to match the blood draw with the required shipping time and lab PCR testing schedule. 

 

Having said all that, you seem to be making good progress, just not fast progress.  Although you could try another drug, and that might speed up the response, there is also nothing wrong with sticking with Gleevec if you prefer.  Steady wins the race. 



#4 Silvertabby

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Posted 13 September 2015 - 10:42 PM

Thanks for clearing that up. We will see what the next results show.
Dx - 9/2013. IS QRT-PCR - 26.5
Gleevec 400 - 10/2013 to present
CCyr - 3/2014
MMR - 9/2015
PCRU - 12/2015
.01525 - 3/2016
.024 - 5/2016
PCRU - 8/2016
.015 - 11/2016
.015 - 3/2017
.015 6/2017
PCRU - 9/2017

God is in control. I will trust Him.




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