Today we had our bi-weekly visit at Mayo Clinic. Poor Jeff, the PA who had me first, stumbled thru some very bad news, which made no sense. So we had to go back later and actually see Dr. Alkhateeb. Alkhateeb laid some heavy crap on us, and hope I make sense.
Basically, all that I went thru on this transplant was for pretty much nothing. I still have messed up chromosome pairs, I still show MDS markers in my bone marrow. Well color me screwed.
As of today, I am no longer on Prednisone, and as of Monday we will start heavily tapering my dose of Tacrolimus with the goal being off that in a couple weeks. The overall goal is to remove all immuno-suppressing meds from my med schedule. This is in hopes that the new stem cell’s immune system will get itself in gear and fix the problems.
Of course, this leads to other problems with GvHD. Without the immuno-suppressing drugs, I am like a beacon for GvHD, the serious stuff. And ultimately I can be dead before I turn 50.
It sucks. MDS sucks. AML sucks. Cancer sucks. Blood Disorders suck. It all just sucks.
All that crap I went thru only to find out it didn’t work as intended. If it didn’t work as intended, it didn’t work.
Needless to say, we are very upset right now and don’t want to talk to anyone about it, family has been told, but everyone else gets to find out thru this blog entry. Please don’t ask me questions, I am not ready to answer them.
