I was diagnosed with cml in June 2006. In December 2006 my pcr was 0.00000. In my travels I have been tested by several different labs in various states, all of which read 0.00000. Suddenly, upon returning to Lexington, KY, my labs have read differently. The last three (3) lab results (all in Lexington) have read b3a2 0.088, b3a2 0.051, & b3a2 0.095. I can't seem to get a reasonable explanation about the differences in lab reports. My doctor assures me all is fine, but the best explanation he can give me is that different labs report in different ways. I am having a hard time accepting such a general dismissal of what I consider to be a major concern. I have seen all zero's for 5 years then I am told all is well when these numbers, which I am totally not used to, began appearing in my pcr lab reports. I am not easily scared when I feel I am adequately informed. Presently, I don't know what to believe. The questions that looms large is: Am I in MMR, are the lab reports accurate, or am I no longer responding to imatinib? I just want to know what I am dealing with. Can anyone make sense of all this?
confused about results from new lab
Posted 19 August 2013 - 01:35 PM
Do you know if the results are International Standard (IS)? What about previous results?
Also you wrote three different numbers, but they are all for b3a2, which I assume is a typo. If you can copy and past exactly what the lab report says it will be easier to help.
As a general rule one result is not enough to get concerned over, although it will certainly shake you up. You need to see a trend over 2 - 3 tests. I would want to repeat the test in one month and see where it goes.
Posted 19 August 2013 - 04:45 PM
The last 3 results all show b3a2 in a narrow range, so the PCR results are likely accurate. If the results are percentages, and they also are International Standard (IS), then you are in MMR, which would be very good. The stability is good, since if you were losing response the PCR result would be rising quickly. If the PCRs are expressed as ratios instead of percentages, that would NOT be good. So ask the Onc: 1) are these percentages? 2) Are they International Standard?
After you know these data points, there are a couple other issues to address, and I would advise getting copies of all the PCR reports, especially those done prior to the last 3 PCRs. Some possibilities include: 1) Previous PCR reports were cut off at -4log reduction, as some labs do. So the previous PCRs may have been positive, but the lab cut-off was -4 log. So the new lab may show the positivity which always existed. 2) The Onc may have mis-read the PCR reports. You may have always been negative for b2a2 but positive for b3a2. Since the b2a2 is reported first, the Onc could see the word "negative" and stop reading. Yes, dumb things happen in life. 3) Other unknown stuff could be at play here -- more data is needed.
But overall you are stable, so that is generally good and not a cause for undue concern at this point.
Posted 19 August 2013 - 04:50 PM
No one seems to be able to tell me if the International Scale is being used or not.
Following are my last pcr reports ver batem:
Sept 2012 : b2a2 transcript <0.001 %
b3a2 transcript 0.088 %
e1a2 transcript <0.001 %
Feb 2013 : b2a2 transcript <0.001 %
b3a2 transcript 0.051 %
e1a2 transcript <0.001 %
Aug 2013: b2a2 transcript <0.001 %
b3a2 transcript 0.095 %
e1a2 transcript <0.001 %
Keep in mind that the last result at the last lab (in Nashville, TN) in 2010 read 0.00000 copies. I know for sure this report was not on the international scale.
I thought that for the international scale to be of any use a baseline needed to be established at time of diagnosis. Otherwise, one would need to observe the trend over several lab reports, which in my case, I am assuming, is rather constant, considering the margin for error.
I am trying to locate my records at time of diagnosis to determine what my original pcr result was. If I have got the conversion formula right then I should be able to establish what my 100% quantity was and thereby determine the values of my most recent pcr's on the international scale. Does it sound like I might have it right? In the meantime I am just having to hope for the best.
I see my oncologist again in 2 weeks. Should I ask for a followup pcr? What if it comes back the same or lower? Higher would be cause for concern, right?
Posted 19 August 2013 - 05:05 PM
Wow, after 7 years I am suddenly confounded by technicalities. I make more sense out of your explanations than the several doctors who have treated me. I am shocked they are not savvy to the changes to IS.
All my other labs are within range and I feel great, so I guess I will take the initiative to unravel this on my own so I don't have to worry about doctor's egos. What a shame. I appreciate you Trey, and the many other patients who have been left to their own devices in understanding the difficulties of uncertainty.
Posted 19 August 2013 - 07:47 PM
At least the PCR reports are percentages, so that is good. I would assume from these reports that you are MMR. So the most likely scenario is that the previous reports would have been positive except they were truncated at approx - 4 log. That would also mean the current PCR reports are not much changed, showing a long term stability. Hope that is the case.
Posted 19 August 2013 - 08:30 PM
If the report does not state Internatioal scale, then it probably isn't. Maybe it is, but my experience with the 4 labs I have dealt with is that when it is IS, they state clearly it is IS.
Posted 21 August 2013 - 08:09 AM
OK, I found out how my lab reports its pcr results. It reports a percentage of copies per 100,000 cells. It's margin of error is 1/2 log. Now I know that 0.095% represents 95 copies detected out of 100,000 cells tested, which is a good thing. However, I am still confused about the 1/2 log margin of error. How do we quantify 1/2 log? Does that mean it could be less, or more? If so, in my case, is the worst case scenario still good?
Posted 21 August 2013 - 09:28 AM
The margin of error for all PCRs is about 1/2 log. So it just needs to be recognized for what it is. Overall it sounds like you are doing well and I would guess the new lab just reports lower levels than the old lab.
Posted 21 August 2013 - 04:41 PM
Thanks Trey. Changing to laboratory's that report differently can cause a lot of anxiety. You have helped relieve much of that anxiety. God bless you.
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