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
Hi Shelley, We have asked about the kids donating but it is not genetically possible as hey have half of my genes an would not match.But they will continue to search for a donor I just hope they find one quickly as it has just dawned on me that the consultant said High Risk myelodysplasia and that does not look good when reading about it
Teri
PS Thanks to all who answered and who are thinking of us
So sorry to hear about Bert. It's just such a rotten, stubborn disease. I really hope that he can have a transplant soon. A few guys that my Dad got friendly with at the Beatson had transplants and got through all that it entails without too many problems.
Both Vic and myself are going through the same thing but with stem cell transplant . Vic has Myelofibroses and Myelodysplasia I have so focused on the Anthony Nollan trust and trying to organise a drop in center for people to get tested more people on the registar the more chance our men have.The waiting is hard but ride it through.Vic has four sisters none were sucessful for donation they have 2 potentials internationaly so we are at the nail biteing stage. My thougths are with you both . Charlotte
Thanks for all your good wishes. We are findint it harder 2nd time around possible because we ar a lot more knowledgable than we were first time and know the pitfalls. But we woll keep fighting
what a shame the children cannot be matched, i really hope they find someone quick, i think its the thought of the long hospital stays that makes it so awful as well, i think the more you read the worse you feel thats how i felt about the whole aml literature. im thinking of you , bert and your family, please let us all know how its going and keep us informed, try and be strong as hard as it is, shelley.x
