Crazy story. My onc sent me an email that my last PCR came in and went down a little, but I still had residual disease. So, I figured the PCR was about the same as it was. My last visit with her, she told me I was not MMR. She calculated some numbers and told me I had to be something like .00009 or something (it had a lot of zeros). It was a little perplexing for me, and I questioned what I thought I knew, but she is a hem/onc and I am not.
BTW, I did not have a reliable PCR until 6 months after dx. So understanding my personal log reductions is a bust. Nevertheless, it appears the IS or lab average is the way to go anyway.
Well, the new nurse only sent me the CBC, but not the PCR report. So, I asked for the report. Now, in the past, the lab had always sent the same generic report about BCR-ABL testing for CML and some types of ALL, yada, yada. I called the lab 3 years ago and they told me they were not using the IS scale. No one could tell me much. So I just went with the numbers I got back. And once in a blue moon, the lab would send a page with my log reductions graphed, or a page with an empty graph, or nothing. It made me frustrated, but I had no control over it. I imagined a bunch of monkeys running the lab.
Well, I got the report via snail mail. The PCR value said 0.015 (with a sensitivity of 1/100,000 and limit of <0.001). I was shocked. And my onc said it went down a little??? Well, it wasn't a log from my last number (.069), but it was what I considered a good dip. And here's the clincher. As I excitedly showed my husband and felt I was granted another year of life, at least, he read aloud: "The standardized baseline is 100% BCR-ABL (IS) and the major molecular response is 0.1% BCR-ABL (IS). The limit of detection is <0.001%." What the?!?! The report NEVER said this before. It appeared the lab had changed to the IS overnight. I looked back at the last report and it had the same paragraph. I never bothered to read the whole report. For years it always said the same thing and IS was never a part of it, or this little, but greatly informative paragraph. I looked up the previous reports and not one mentioned IS.
Trey, if you see this, you were right. You said I had to be MMR by now.
This time, the lab sent a graph with my PCR values since 8/8/11. The values looked the same as what they always had. I didn't notice a change since the lab's conversion to IS. I am confused if they are graphing my old PCR numbers with the new IS values. It wouldn't surprise me. Or, the lab was always using the IS and nobody knew. That wouldn't surprise me either. If this is accurate or new management, I am thrilled. And it looks like I have been MMR since 11/8/11. That would be consistent with the 60% who get it at a year to 18 months on Sprycel. But I don't care.
I hope this number is correct. I was so depressed with my onc telling me I had not achieved a MMR last month . This has been a crazy ride. I am so grateful to what you all have taught me about CML and PCR values. And Trey, I want to kiss you!
I will let my onc know what I found out at my next well visit in February. If this is a dream, lab monkeys aside, don't pinch me! Looks like you guys will have to put up with me for a little while longer.
Happy New Year to all my BIFs,