Wishing you the best. If you can beat this maybe I can.
Confused about the PCR test. You said below .01 is undetectable. I just had my 9 month PCR test and once again it came back .01%. The doctor said it isn't undetectable yet but it could be lower than .01% but anything above undetectable and .01% or less they report as .01%. As an example if I was .006 they would report it as .01%. Why on earth do they make it so complicated. Why can't they just tell me the number! All I know is I am <= to .01%.
Anyway just frustrated and you said above that anything below .01 is considered undetectable. Pulling hard for you. Good Luck.
Rcase - Chris is correct. At M.D. Anderson, I had the pleasure to speak with the Pathologist who runs the lab where my PCR tests are done. He explained to me that any level (at M.D. Anderson only) that records less than 0.01, they either mark as "<0.01" or "undetected". The sensitivity of their PCR test is 0.01. Some doctors in the lab record it as <0.01 some write down "undetected". The third decimal place is noise. He mentioned that when they run calibration samples where a test vial has zero bcr-abl proteins they still can get readings (in the third decimal place). They know it's noise regarding the accuracy of the test.
In my case, I have been <0.01 for quite some time - until now, I am not < 0.01 any longer like I have been. i was told that I still could be, it's just the nature of the test error range (one half to one log). What they care about is log trend - which is a factor ten change in the number. If my PCR went from <0.01 to 0.1 - then there would be a concern. And then if climbed from 0.1 to 1.0 - I would say, I have lost MMR and CML is progressing. That would be a two log jump and that is very significant. The reading I received this week is in the noise variation of the test, so I was told - don't worry about it. And I am not ... for the most part. I'll need many many more tests like this one to prove to me that the variation in the results is my new normal at this low level and that my remission continues without the need for Sprycel. That's all I really care about - no drug for me.
Also - different labs conduct PCR testing differently. It's not quite standardized although they try to calibrate to the so-called International Standard. M.D. Anderson does not use the International Standard (I.S.) (why? - I have no idea) and their levels always report higher (by percent) than I.S. They are not comparable except roughly using a calibration scale. Because the 3rd decimal place is meaningless, once a patient achieves a <0.01 M.D.Anderson scale, it's noise. It's a great place to be - especially if its month after month. For six months I had that - and that's when I decided to test "cessation". For 5 months following cessation same result - until now. Still noise, I'm told - but we'll see. Next month will be a good indicator of whether I just experienced a bump in the road.
Trey has a good commentary/ summary on PCR testing and its vagaries, misconceptions and such. Perhaps Trey can point to where this has been written up in the past. I will be meeting the Pathologist who signs my PCR reports next test. I look forward to actually visiting the lab where these tests are done and actually seeing how the test is conducted.
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"