AML FLT3 with chromosome 18 affected - any experiences?

Hi… posting on behalf of someone who’s been in touch with me and I am wondering if anyone in this forum has any experience of this…
He has AML FLT3 with Chromosome 18 affected. He also has a rare tissue type so there is no donor for him on the register at the moment.
He has also just been diagnosed with bowel cancer.
Can anyone share any experiences or information that may help him.


Hi AnnaMam,
I was diagnosed in 2008 with AML, had 3 rounds chemo on Trial 15. Went into remission after first round, only to find out that all my 6 & 9 chromosomes had swapped places. I was told I’d need a Stem Cell Transplant for the chance of the best possible outcome. Had my SCT from my youngest brother & have lived life to the full once I got the red light to go.
Good luck & tell your friend to listen to the advice of his team & always ask questions.
Also tell them to take someone with them to all appointments & make sure to get the contact details of their Clinical Nurse Specialist.


Not able to offer any advice, but sending best wishes to your friend Anna. Is the bowel cancer connected in any way, and are the two departments (haematology and oncology) liasing about treatment options?

Hi thanks for your reply, yea I’ve already given him the information you’ve suggested when he was first diagnosed over a year ago…he’s had a transplant which has failed and there are no other options now… He has a rare mutation. I’ve since been in touch with a couple of Professors I work with in some research projects and have more clarity on the type of AML.

1 Like

Gosh @AnnaMam what a hugely difficult situation for your friend I’m so sorry to hear this. I really hope the professors you’ve been in touch with can offer some helpful guidance.