Bert has Myelodysplasia after a few months remission from AML His Myelodysplasia which will evolve back into AML, although they can't say when. they said he needs to have a bone marrow transplant to have any life, we have to go back in 2 weeks as it will change quickly.bloods have stayed the same since last week and they will monitor him closely They have emailed the bone marrow team in Glasgow to get the ball rolling and start the search for a donor. We are not even sure at this stage that the transplant team wil do the transplant as last time the just said they would revist it when the time came and that Bert was to get himself fit, He never got the chance to get fit although he has put on weight they might consider a "mini transplant" But we will need to wait and see We are both completely gutted and have not really come to terms with it we were just getting used to him being in remission in the first place
Love Teri
FormerMember
Bert was at the clinic today, his counts are still dropping but they said we can go on holiday tomorrow armed with painkillers, antbiotics, antivirals, we will need a suitcase just for the pills. But we are allowed to go.
We got Bert's appointment through for the Beatson to discuss the BMT (again) it is not until 22nd October which feels like a long time away. but it will get the answers we need. Are they going to do a BMT, because last time they said no because he was too old at 56 he will be 57 when we go back, Does the New??? diagnosis change things ?
Have they found a donor yet. How long does it all take. So many questions running through my head I have started writing them down again. Although to be fair the last time we went the Consultand answered all my questions before I had asked them. I wonder if they were pre warned that I always have a list.
Bert is still much the same but he is now neutropenic again. Still sleeping a lot of the time and still gets very breathless. Just home from a very rainy week in the Lake District. It was very peaceful.
I really hate the waiting! It does seem like a long time, and in some's view it is! Are there any other options besides the BMT that they will do if he can't have one?
thanks for your kind thoughts. BMT is the only "Curative" option available, if it is available. Other than that it will be pallative treatment. Until the time comes he can have blood and platelet transfusions as and when required but until we at least get to speak to the transplant co-ordinator we don't know what will happen. We had a copy of the letter that the consultant sent to the transplant team which says that his bone marrow is so dysplastic they are unable to tell how many leukaemic blasts are actually there so in plain english I am reading that as they don't really know if he has relapsed yet or not. His counts are low and we will get them checked again this week if the go any lower he has to start more anti virals.
