Thursday, January 3, 2013

Day 201 - part the second

Please start with the other half of this day.
The important part about what he said had to do with the gene mutations. There are two mutations that are important in leukemia like mine where the chromosomes look normal under the microscope: NPM1 and FLT3. NPM1 if positive is a good prognostic sign and FLT3 if positive is a bad prognostic sign. A person can have either or both positive in any combination. The ideal time to do these tests is at diagnosis when the sample is filled with leukemia cells with their little leukemic genes. For complicated reasons, I didn't get the tests run then, but the tests were run on my day 14 marrow which was "empty." (remember that from all those months ago? This was done after the chemo to make sure that "the garden had been emptied of flowers and weeds".) The marrow could not have been completely "empty" or I would never have recovered marrow function, it just looks empty. That also holds true for the leukemia, that most of the leukemia was killed off, but it is well known that if you stop therapy there, the leukemia will reliably come back so there are some leukemia cells in there, even though we can't see them. There were enough cells in there for the NPM1 mutation to be detected in my case. That's the good prognosis one--yeah! The bad prognosis one, FLT3, was not detected. This could mean that it wasn't there (a true negative) or that it was there, but not in the poor quality sample we gave the lab (a false negative). Most people with NPM1+ are FLT3 negative so the odds are about 3:1 that I am FLT3 negative.
If it was truly negative, then I am truly done with chemo and at very low risk to relapse. If it was falsely negative, then I would be at much higher risk to relapse and he would recommend more treatment. My leukemia has behaved well, been responsive to chemo so that also favors FLT3 negative. However, none of these things is proof. If the proper sample of my original diagnostic material can be tracked down, he has a fellow who can process it and retrieve the true FLT3 or not status from the vault, so to speak. My job tomorrow is to track.
The other thing he said which was very interesting and a prime example of medical reasoning was that if I had come to see him in August or even early December, he would have advocated for a fourth round of chemo for me, but now as I was six weeks past chemo with normal labs, I had already proven that I would not relapse quickly so it made him more confident that my leukemia had been adequately treated with three rounds of chemo. Each day that I go without relapsing makes it less likely that I will relapse ever. The risk is front loaded, in other words, and is less with each passing day. It's a funnily reassuring way to look at it.
The one thing about people who give second opinions that is important to remember is that he did not see how sick I was when I had my neutropenic fevers. I was never at risk truly, but that is the sort of thing one can only know for sure in retrospect. I think part of why John lost his enthusiasm for more chemo for me is that I kept getting those stupid infections and he was afraid that one of them might land me in the ICU or worse.
In those eleven vials of blood were a bunch of results I got yesterday, normal blood count, thyroid, liver, kidney, etc. and a few pending tests too. I think this means that I will (hopefully) hear from him about the FLT3 and probably about a few more obscure send out blood tests. Doesn't everyone want to know their erythropoetin level?
In other news, today was a pleasant day for me and I have nothing more to say about it after this little essay on leukemia mutations.
For me, for tomorrow, I will hope for lots of ideal diagnostic material that can be found easily, shipped without being lost or mislaid and tested reliably. After all that, I will hope for a negative test result. For you, a simpler wish, that you are free from logistical hassles and all your news is good.

1 comment:

  1. Hi,

    I have a quick question about your blog, would you mind emailing me when you get a chance?