My dramatic weight loss and widespread skin rash convinced my doctor that it was time to address my graft-vs-host disease directly, so I started taking prednisone on Tuesday. I will begin taking sirolimus next week. Both drugs are immunosuppressants, so I will have an increased risk of infection.
Also, I will be suppressing some (maybe all) of the anti-leukemia behavior of my donor cells. I have to hope that they have done what they needed to do — I will get my most recent report card in a few days, when I get the results of me last bone marrow biopsy.
The fact that it was the 100-day biopsy that brought the first bad news after the last transplant makes me apprehensive. The fact that I have had significant GVHD after this transplant makes me (and my doctor) hopeful.
My weight loss has stopped, and my appetite is better, in the days since I started taking prednisone (a steroid). I can't say the rash has improved much. It no longer covers half of my body, but that change had already happened before I started with the new medication. It feels like I'm chasing it around my body with ointment — it's clearing up on my chest and legs, but getting worse on my arms.
My weekly blood tests have been very good. White blood cells and hemoglobin are at normal levels, and platelets have climbed slowly but steadily toward normal.
Glad to hear you're not becoming Twiggy anymore, though it could have created new employment opportunities as a model! Sorry to hear the rash is still bothering you, but maybe it is good that the prednisone hasn't entirely suppressed it, if it means your donor cells are still wrangling with any remaining leukemic cells.
ReplyDeleteYour lab results are so encouraging, hang in there!
ReplyDeleteDeborah
You're doing great, Joe. Life is good, if sometimes uncomfortable.
ReplyDeleteLook at what I found today (not on my own -- I got a tip): a baby great horned owl! All fuzzy and alert and ready to take life on.
https://www.facebook.com/media/set/?set=a.3269041056903.2137765.1593635924&type=1&l=f11561bdaa
Hey Joe,
ReplyDeleteHere's fingers crossed for that report card. ("I'll take 'GVHD is a good sign' for $1,000, Alex.")
Hugs,
K
Hang in there, Joe. Wishing you the best for a good interim report.
ReplyDeletePut me down in the hopeful camp, too. Hope the prednisone clears up the rash -- but not the attack on the leukemia cells. Fingers crossed for an encouraging biopsy report. (That makes typing harder though)
ReplyDeleteSarah