AML FLT3 NPM1 mutations

Hi  and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike and I help out around our blood cancer groups.

I don’t have AML but was diagnosed way back in 1999 with a rare incurable but treatable type of skin Non Hodgkin’s Lymphoma Stage 4a.

There are number of folks in the group with the FLT3 mutation so let’s look for them to pick up on your post.

Over my 22 years the one thing I always took firmly on board was what my various clinical teams said was always based on up to date knowledge and data something that Google is very bad at….. as each case is so different and let’s face it Google does not know your case and the detail of the presentation.

Back in Sep 2016 I was told I was in a long lasting remission for the first time in 17 years then in 2018 my team actually discharged me with the words “Mike, you know that your condition is incurable but we think the treatments you have had has kicked it far enough back that you may well die with it, not because of it but as always you know where we are if you think things are kicking off but do spend your time on focusing to live a life hard fought for”

Good morning Kriss89 I am so sorry you have been diagnosed with AML .

I was diagnosed with AML in April 2018 aged 61, my mutation was also Flt3 and Npm 1 I had no idea what that meant at the time but on googling it terrified me. I went on to have 3 rounds of chemo gained remission and was sent home in October 2018 to enjoy life. I did however relapse quite quickly in February 2019. I then went on to have a bone marrow transplant in May 2019. It has been quite a tough journey at times but my last biopsy showed me in remission and full donor. Life is good again. Your team may decide on a transplant straight away or they may say no need. Some people have remission for years with chemo only. I hope all continues smoothly for you, feel free to message me if you need more information about my journey xx

Hello Kriss89. I had the same FLT3 with NPM1. I was in France at the time and had three rounds of Chemo then SCT. My sister who is a virologist said dont bother to look at Dr Google as its out of date. Listen to the doctors that are treating you they have the most upto date knowledge on outcomes. Its scary but I am now 7 years in remission. I had a long recovery period as my blood changed types to that of the donor. Good luck and stay in touch.

Jackie