NotBaldwin
Highest Rated Comments
NotBaldwin14 karma
Hi Bri!
What Graft vs host do you have?
I'm 29, I'm just over a year post transplant for Philadelphia postiive B-Cell Acute Lymphoblastic Leukaemia. I was diagnosed in Feb 2019, and had my transplant in July 2019. Prognosis for my flavour of ALL without a transplant is extremely poor, so they transplanted me as soon as my disease levels were low enough. I had a 10/10 match similar to you! I had some gut GVHD immediately post transplant, however budesonide (steroids) cleared that up. I had sporadic skin GVHD until about March, and that seems to have cleared up on it's own.
My hair is now all back, I'm quite fit again, and on Wednesday I'm going to get most of my childhood immunizations which is cool!
Sounds like you had quite a rough time with your transplant all in all. I had a fair bit of mucositis of the anus, which was as fun as it sounds, but aside from that I was relatively medically boring.
I hope your GVHD isn't impacting you too much, though having it is 'good' as it should mean you've got a nice strong graft-vs-leukaemia effect.
NotBaldwin9 karma
Oh wow, that's quite a full on combination. I suppose if you're going to have chronic GVHD you might as well do it properly!
I've heard promising things about various new drugs (remdesivir for one) that have been shown to be good at treating extreme acute/chronic GVHD. I hope your consultant can get you on something that improves things.
NotBaldwin24 karma
You could always... Take his face off?
View HistoryShare Link