A few more weeks have passed… where was I? Oh, right. Relapse. Three un-great options to get back into remission so that I can get the transplant.
It turns out, there was another option. A new drug which was only approved in December of 2022. Olutasidenib. A drug so obscure that the UCSF team didn’t know about it. A drug so specialized that it only works on relapsed AML with one specific mutation. I’m a member of a very small club. The not-so-great news there is that it only works in about 40% of cases. So, I wasn’t overjoyed to find out about it, but cautiously optimistic, and it seemed like the best option available. And there was hope to get back into remission and race to the transplant quick, before I relapse again.
One of the interesting things about Olutasidenib is that we can see if it’s working during the two-month course of medication. Dr. Jonas at UC Davis said that we’ll be able to tell from my twice-weekly blood tests. Give it a month or so, he said. Well, it’s been a week and a half, and my blood tests are much much better. Hemoglobin is steady since my last transfusion. White blood cells and neutrophils have gone from critical to decent. Platelets have gone from low to normal.
Another good thing about Olutasidenib is that I can have my long-delayed oral surgery during that two-month course, if my blood tests are OK. That way, I can get to the transplant sooner with less time to relapse. Well, my blood tests or looking good, so I guess I can schedule that fun fun oral surgery now.
This was going to be such a bleak post, all about how tired I am. Tired of being tired all the time. Tired of pills. Tired of blood draws. Tired of medical appointments. Tired of bureaucracy. Blah blah blah. Bitch bitch whine whine. One good blood test has flipped my ‘tude dramatically.
Oh, and another source of stress has been relieved. Just as I was trying to figure out how to cover the extra months of semi-infirmity, I received another nice contribution to my GoFundMe.
Yes, I will get through this.