Unfortunately my MF transplant story has not turned out as positively as I was hoping when I wrote my first MF transplant post. Essentially the donor cells have failed to engraft. Tomorrow I commence work up testing for a second transplant which is scheduled for later this month. This time we are going to try a haplo transplant with my son as donor. The first transplant was with a matched unrelated donor (MUD).
One may wonder how do I feel about my decision to go to transplant in retrospect now that things have not gone as well as hoped. The simple answer is that I still feel good about my decision, it was the right one for me at the time. I always considered it as a fork in the road with two reasonable options and that I would embrace whichever option I chose with my eyes wide open. No regrets.
The rest of this post is really targeted to future travellers who are looking back at how another transplantee progressed...
By Day +34 my consultant was concerned about engraftment and wanted to stop my immuno-suppressant (350mg ciclosporin bd). I was concerned that he was being impatient and after some haggling we agreed to half it. On Day +41 we agreed to half it again and by Day +49 had stopped it all together. I did develop some minor itching after stopping the ciclosporin however the desired GvHD did not occur.
Some misleading good news during that time was that chimerism testing of the few neutrophils that I had, revealed 94% of them where created from donor cells.
Interestingly, a BMB revealed that my marrow had changed. There is now some space in my marrow where fibre had been. Considering my marrow has been heavily fibrotic for over 22 years, any change is good news to me.
Article sciencedirect.com/science/a... is an interesting read.
Another positive change of the transplant is that my spleen shrank up nicely and now fits almost completely on the left hand side of my abdomen. It extends just slightly past my umbilicus.
I am of course still heavily dependant on regular blood top ups.
Unfortunately infection caught up with me on Day +56 (hgb 53, platelets 3, wbc 0.9) and again a couple of weeks later (hgb 47, platelets 9, wbc 0.2). My body took a bit of a hammering over that time.
While back in the BMT unit recovering from the infections had a number of discussions with my consultant on how to proceed. We did discuss requesting more cells from my donor but his feeling was that my body was too harsh an environment for the donor cells. He feels that my spleen is soaking up the cells. He was keen on a splenectomy - a rather dangerous option for someone with counts like mine. I was also put on Rux for a day.
At the same time, my consultant reached out to other doctors overseas. It is rather humbling that one of the replies was from Prof Kroger who suggested a second transplant with a different donor, which is the approach we are now taking.
(Talk of a splenectomy was stopped as well as the Rux.)
Cheerio for now. Best wishes to All, including future travellers ...Simon