Young AML with FLT3+ experiences

Hi, I was recently diagnosed with Acute Myeloid Leukaemia specifically NPM1 and FLT3 positive mutations. I’m 30, non smoker, non drinker relatively healthy and not really overweight. I have seen a lot of info regarding this diseases affecting people over 50 or 60 but wanted to know if there were any people near my age in here who would be willing to share their journey? I just feel really lost and want to feel not alone anymore.
Thank you very much :pray:t3:

4 Likes

Hi @JimmyC

Welcome to the forum. I’m really sorry to hear of your diagnosis & know how you must be feeling. I was diagnosed just before Christmas last year & didn’t tell a soul. The feelings of being lost is perfectly normal it’s such a thing to process & when you feel the feelings of why me etc reality kicks in. My cancer is quite a rare one & like yourself am classed as being way to young for that type of cancer. But I guess it happens there will always be people that don’t fit the picture. So maybe that makdo you us ver unique. It may help you to call our helpline to chat to one of the team 0808 2080 888 aDo you have a support nurse to see at the hospital? The nurses are extremely helpful & have great knowledge. Rest assured though you will always find great support here. I hope that that you are getting some sort of support & please do not feel alone we are here for you.

Take care :cherry_blossom:

3 Likes

Sorry about the typo I meant that I guess it makes us very unique. :grin:emphasized text

3 Likes

Hi @JimmyC a great welcome to our forum and again I have a different diagnosis.
As @JoJoflowergirl says we don’t always fit into boxes.
I am a girl, diagnosed at 53 yrs old, and I have heard my blood cancer called the Old Mans Blood Cancer.
I am also a non smoker, non drinker, relatively healthy and not overweight.
Perhaps nobody told our blood cancers.
Your saying that you feel really lost and fearful came straight home and wrote my will and funeral music, I remember feeling the same, the only one person in the world, I felt in a bubble with the world going on around me.
As @JoJoflowergirl says the Blood Cancer UK support line is great to chat to and if you have a support nurse they are also a great contact for your questions.
So many of us will share similar fears, thoughts, feelings and practicalities.
Give yourself time, you have had a great shock, look after yourself and be kind to yourself.
I look forward to hearing more from you.

1 Like

Hi @JimmyC ,

I wasn’t quite as young as you. I was 41 when I was diagnosed with Acute Myeloid Leukaemia, but I was also NPM1 FLT3. I was also pretty fit and had run the London Marathon 6 months before I was diagnosed. That was back in 2014. I had my stem cell transplant in 2016 and I have been in remission for almost 7 years now, if that gives you any hope.
I also read that Acute Myeloid Leukaemia was an old man’s disease, but I’ve come across plenty of other younger people with Acute Myeloid Leukaemia since I joined this exclusive club. Your youth and health will definitely be of help to you and NPM1 is a favourable mutation too. Where are you being treated?

4 Likes

Hi @JimmyC So sorry to hear about your diagnosis, it must have come as a massive shock but there’s a lot amazing people here will be able to share experiences & support you.
I’m not your age now but was diagnosed with Acute Promyelocytic Leukaemia when I was 22 in 1995. I’d just finished University & like yourself I was otherwise healthy. I had 9 months of chemo but came through it & have been in remission since 1996. Initially it was difficult going from being very active to being stuck in a hospital bed with no energy but I’d tried to remain positive. There will be times on your journey when you feel overwhelmed, confused & maybe even angry but just try to take each day one at a time. It really helps to talk to both the helpline as @JoJoflowergirl suggested & others who’ve been through the same thing. I’m more than happy for you to get in touch with me.

2 Likes

Hi @StevePJ great to hear from you and thanks for sharing your experiences.
I bet treatments have really changed since 1995.
Look after yourself and I look forward to hearing more about you

1 Like

Hello… so sorry for your diagnosis & that you’re feeling along… you are not alone in feeling alone… I’ve been there too. I was diag with Acute Myeloid Leukaemia at age 39 and as you say it’s predominantly in older people but there are some of us younger ones too.
You’re no longer alone because you’ve found this forum and posted your message.
Which area of the country are you in?
Do you have any questions/thoughts in particular?
Warmest wishes, Anna

3 Likes

Hi @Erica I hope you’re well.
They certainly have, I’ve seen amazing progress over the years, in 1995 & 96 I had very harsh chemo whereas now more often than not APL is treated with a combination of ATRA & Arsenic trioxide.

1 Like

Hi @JimmyC you said you were feeling really lost and did not want to feel alone anymore and I was wondering how you are feeling now.
Be ever so kind to yourself.