As most of you know, our close friend Tyler had a transplant a year ago. Ever since October, I have preparing myself for the same path ever since I got on Sprycel.
After about 1 year of being PCRU, CML started showing up again on his tests. It was miniscule to start with, but at the 1 year anniversary post his transplant, it shows up with cytogenetic of 2/20. They decided to do a DLI, which is basically a boost of white cells from his donor (father). After being off Tasignia for a month, he suddenly found out that he was close (if not in) blast crisis. His White count didn't show it, but he had 17% blasts in his blood. They also discovered some tumors that are related to the CML white cells, and they are looking to treat those with localized radiation.
The good news is that after 3 days on Tasignia, his blasts were down by 50%, and at least he is responding to the drugs again. But it just shows how fast things can change, and that a transplant not only carries risks, it doesn't guarantee results.
CML is a strange illness. For some it's a wild roller coaster ride, while others as my mother's friend from High School who was on the Gleevec trial, is doing great 12 years later. All we can do is grab on tightly and go for the ride, we have no other choice.
PS. In my warped mind, I was thinking that if I had to make the decision of a transplant back in November, I may have wanted to time it such that I was 'stuck' watching March Madness while recovering....If you ask Cynthia, my real illness here is March Madness and my love for SU Basketball....Go Cuse !
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