I was diagnosed with AML (NMP1 + FLT3) back in June 2021. Had 4 rounds of Chemo and then went on to have a transplant in Feb 2023 with the MRD levels not as low as they would have liked. 2 months later they decided that the transplant hadn’t worked and I got the “Terminal” chat from the consultant …. Ended up on a course of Gilteritnib which has kept the disease under control up until now. So now I’m looking into the Trial options. Anyone else doing/done this? In particular a Menin Inhibitor - would be interested to hear your experience……
Hi GuitarGuy and 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.
I don’t have AML but I was diagnosed back in 1999 with a rare, incurable but treatable type of NHL reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I know this journey rather well..... especially as I have had two Allo (donour) Stem Cell Transplants.
My first Allo SCT failed within 6 months and as there were no other treatments available we rolled the dice and used a different conditioning and had another go........ that was back in Oct 2015 and remission was achieved in Sep 2016 and so far all is staying fine.
I am not aware of any group members in the exact same position as yourself but let's see who picks up in your post.
For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444
We also have our general Living with incurable cancer - incurable patients only (Please join the group but this will then have to be approved by the Macmillan Community Team so will not happen immediately) as this would be a good place to connect with others navigating this journey.
Always around to help more or just to chat
