Thank you for your interest Susan - I know you have been having a very difficult time since your transplant.
Rio's biggest problem post-transplant has been his reluctance to accept that there is (has been!) a low residual level of CML which requires treatment, because he feels so well. He has refused DLIs when they have been due and in the end had them weeks late, with bcr-abl results showing he has put himself at significant risk of relapse. (Something to do with being 16 and 'invincible'.) But he accepted the consultant's suggestion that he should take imatinib to back up the DLIs and it seems to be the imatinib that has worked the magic. He will be having another bcr-abl test next week to hopefully confirm the zero. He still has 2 doses of donor cells in storage and I imagine they will be given in the next few months. Not sure about that.
He will still have to attend the endocrine clinic sometime to look at the hormone levels etc, but has not had any GvHD at all, except a mild rash in the immediate post-transplant period. He is aware of some concentration and memory issues which are most likely related to the radiotherapy he had before the BMT. He has some slight skin discolouration on his face and drier than usual skin with increased sensitivity to sunlight - again due to the radiotherapy. Lymphocytes are still recovering (it will be 2 years since transplant in June) but now he is back on imatinib, his WBC has dropped which I suppose affects the lymphocytes too. He has had a succession of colds and they hang around. He has just had a week off imatinib as he had become neutropenic. In general though, the hosp are very pleased with his recovery from the BMT.
I often think that this post-transplant period is so much harder than the BMT was. During the BMT the goals were clearly defined and the steps were close together.
But days like today are unbeatable!
Thinking of you and sending very warm wishes your way.
kestrel
