Awaiting or considering or had a stem cell transplant, a place to share here

Morning Skye

I’ve only just picked this up - sorry :pray:
I’ve been on on ECP since July 2014 and I can honestly say it has given me back a lot of the life I had before ALL changed everything.

Whilst my acute and then chronic Graft-versus-host-disease post-transplant was being kind of managed (in my opinion abysmally) by immuno-suppressants (ciclospirin & steroids) it was ECP which got me off them.
But here is the thing, it took 2 years of fortnightly treatment to do so. It appears to take one heck of a long time to train/re-train an immune system.

Regarding useful tips, apart from those you will have already read at Anthony Nolan or on the patient consent form package in my opinion the most important thing is to have a positive attitude to the treatment.
I try never to forget how lucky I am, not just to be alive but also to have been offered this treatment which I could never have possibly afforded in a private health system.

I hope this helps but please do come back if you think I could answer any other questions.

Kind regards