Unfortunately, the testing for the mutational status did not work for technical reasons, presumably because there were too few leukemia cells left after my last chemo-immunotherapy. This test can be repeated at some point in the future, but it may not work when there are so little leukemia cells in place (from the chemo). Sometimes, even with small numbers of CLL cells, the test can still pick up a signal, but in my case, despite several attempts, it did not work.
So the next step is to wait and watch. There are little leukemia cells in my system (yay!) at this time. Upon choosing this route, Dr. Burger (at MD Anderson) suggests monitoring the disease from now on with serial blood draws and physical examination, initially every 2-3 months. Once the disease becomes active again, I would begin to take the kinase inhibitor, Ibrutinib. Ibrutinib (Imbruvica) is the pill I mentioned previously that has been shown to control CLL without the risks involved with receiving chemo-immunotherapy.
So for now, I will live my life to the fullest as long as I am feeling well. If things start to deteriorate, I will get to Houston sooner than later. At this point, Dr. Burger wants to see me next in August or September.
PS My left arm, where I had the chemo, is STILL purple, bruised, and painful to touch from my first chemo 4/18-4/19. It is not a phlebitis or infected, just normal bruising. I cannot imagine having to again stick this arm and run IV infusions for 6 hours 1 day and 2 hours the next day. I know people do it; I just cannot imagine. I may have to do chemo again in my lifetime, but I am just thankful its not today! Cheers!
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