Hi everyone thank you for allowing me to join this community.
I am 56 yo, have been diagnosed with MDS -5q about 3 years ago, but my latest yearly monitoring BMB shows increased blasts and a SCT is now recommended, before my MDS evolves into AML. Just wanted to see if anyone has any idea what the post transplant picture looks like in Glasgow, where I am going to have my treatment, I was told I would have to stay there for 4 weeks, even longer if I get infections/complications etc. What does it look like? Do you live by yourself in a room alone, are you supposed to have a carer looking after you? and Could y please point me to threads that discuss what the experience is like pre and post transplant? Are you allowed to exercise? (and can you even if allowed??) Thank you again
Maria
I just read your incredible story! Sounds like something out of a science fiction book 
. It would be lovely if we could speak over the phone Mike? I would love to ask some clarification questions especially since our medical team is the same. Only if possible...
So far I only know if one other person who is in the USA who had 2 Allo SCTs….. but from the start this was the fall back plan.
Post Allo SCT….. starting about day +100 post the day the Stem Cells are put in (day 0) you start to get what is called Chimerism Genetic Blood Tests….
These tests are used to monitor the success of SCT by evaluating the ratio of donor and recipient DNA in her blood looking for the donor stem cells to be higher than your own stem cells.
They will also start reduce the anti-rejection drugs. These drugs are used to suppress our immune system stopping our bodies T-Cells (killer cells) from attacking and killing off the donor cells. Thus process us exactly the same for heart, kidney etc transplants.
The slow reduction of the anti-rejection drugs allows our old self fight with the growing all new immune system looking for the donor cells to win.
At this point in time we are also open to GvHD as our old self will try to kill off the new cells in different ways (you will find information about GvHD in the links I have given you)
I had a few Chimerism tests between mid Sep and start of Dec resulting in me being told on Christmas Eve 2014 that there was no evidence of my brothers vmcelks or DNA in the test.
I was perfectly well after my first Allo SCTs….. our hope was that the 6 cycles of chemo I had had to control my aggressive Lymphoma had put it into remission and the skin treatments and drugs I was on for my long standing Lymphoma had controlled this enough to allow a rather new conditioning to be used as this was specifically designed for my long standing Lymphoma and if it worked I would recover very quickly….. yes I was very well throughout the 28 days in the SCT unit to the point I drive the 4 hrs home once I was discharged.…… but as it turned out my Lymphoma was not completely in remission so the graft got wiped out.……..
I now see from your post that you have looked at my story….. we all do what we need to do to get through this.
I have sent you a friend request - look for the little red flag/symbol near the top, click on it and accept my friendship request…… or you may get an frendship request email.
