My husband was diagnosed with MDS - EB2 transformed AML. DDX41 mutation, in January this year after routine blood tests he has had no symptoms before or since. It became AML in March on 27th March he went in to Kings College London for chemo. During his time there he got a rash which they said was due to antibiotics he was taking so they changed to a different one and it cleared up. After 5 weeks and several transfusions of blood and platelets and several temperature spikes he came home. Both of his siblings have the same gene so can’t be donors but they have found a 10/10 unrelated donor. After all of the above he has responded really well, better than we could have expected. He went back into KCL on 7th June for more of the same in readinesses for SCT at the end of July.
While in KCL has suffered a very bad bout of diarrhoea and sickness and his Neutrophils are not coming up like last time. He has now fallen into a deep depression and said to me “I think they have broken me this time and I’m not sure they can fix me”
He has now been home for 3 weeks and although the depression has passed he now suffers from really bad OCD and he’s really stressed I have suggested a counsellor but all he says is that it’s not the right time because if his numbers were higher he wouldn’t feel this bad and whilst I get that I’m not convinced.
He is due to have his SCT at the end of August and I know the magical time is 100 days (which will take us to Christmas) I just think he is gonna get worse.
So here’s where I need help, I need support for myself in how best to get him through this is there someone who would be willing to talk to me who has been through the same and come out the other side either by message or email or phone TIA 
️
Hi ValerieJ1999 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups as well as our dedicated Stem cell transplant group.
I don’t have AML but I was diagnosed back in 1999 with a rare, incurable type of NHL Stage 4a so although my Blood Cancer ‘type’ is different I have had two Allo (donor) SCTs so I appreciate the challenges of this journey very well.
Could I suggest you join our Stem cell transplant group, set up a post and copy and paste the text from this post into that post.
There are a number of folks, some with AML who have had their SCTs in the past year or so, this is a good place to talk with folks who have had SCT or family who have support family.
I will keep an eye open for you in the group.
