Reading back where I left off, it's hard to know where to start.
I'm going to have a stem cell transplant. It's happening soon. Next month.
I have not had a catastrophic loss of response to my current TKI, but it is failing. The tests that measure my cancer are creeping up consistently, and there is no telling how long Bosulif is going to continue to work to suppress the cancer proliferating cells, and prevent them from going wild again. I have tried and failed Gleevec (imatinib), Sprycel (dasatinib), Tasigna (nilotinib), Iclusig (ponatinib), and am now losing response to Bosulif (bosutinib). There are no other currently approved TKI's to treat CML, so I'm left with little choice. If I lose complete response to Bosulif, and my CML goes into Blast phase, it will significantly reduce my chances for survival.
I have been experiencing more minor infections, increased fatigue, and my FISH tests have gone from a low of 20% last October back up first to 26%, and in June, up to 29%. That means that out of 100 cells that they looked at under a microscope, 29 of them were positive for CML. That's nearly one in every three. Last year, it was only one in every five, so it's a slowly-moving, yet alarming trend. (The bcr/abl PCR test has also gone up from 3.6% to 5.6%.)
I've spent the past month or so racing around trying to prepare for a nightmare. Trying to smooth the way. Stocking up, cleaning up, eating up. I don't think that you can ever be fully prepared for something like this. I've done my best. Most people don't even get that chance.
There are undeiable risks. I just keep trying to remember, individual results may vary.
The Median Isn't the Message
I intend to rage.
