A post of hope for people recently diagnosed with/under treatment for AML

Hi I have used the boards in the past reading up and finding out info(mainly about coping mechanisms) when I was first diagnosed. But never really posted before. I made my decision to just hand my treatment over to my consultants and their team, I never even wanted to know type severity etc. Main reason was I was a pharm research scientist and I knew my background would take me down a worm hole of research & I didn’t want to go there!.

I later inadvertently found out it was genetically one with an unfavourable outcome ( A new dr though I already knew so just suddenly started discussing it/ options)

Anyway my post today is to give hope to those recently diagnosed or who like, I was, are having a tough journey on their treatment path.

1.My brother wasn’t a match no other good match could be found
2. I got so ill with each treatment (I hold the record in Scotland (or at least did) of 79 days before producing any white cells after treatment).
3. My lines kept being a source of infection so after chemo would get removed and cannulas would have to be used
4. My last round of chemo was canceled, Consultants decided I was too ill to get through it again and they were very worried that my bone marrow wouldn’t recover.
5. It was designated genetically a high risk type

So why am I saying all this. That was 5 yrs 8 months ago. 5 yrs 2months since my last treatment.

Even without stem cell and without completing the treatment plan (only ever consider this if your consultants are suggesting it), it can still work out OK - I have been declared effectively cured and discharged last week

I still have small issues I don’t make lymphocytes, my ferritin levels are still at about 400 but we are now stopping the blood removal as I am also a little anemic which gets a lot worse when the unit of blood is removed. Ferritin was at 3500 after transfusions during treatment so at least it is down

Main this is a now feel completely back to normal, and with lasts weeks discharge I am starting to plan ahead again. Until now it has been a psychological battle of I need to make the next big event (which is this Saturday for my daughters wedding). But yesterday I actually booked a holiday for next winter

Hope this post gives those just starting this journey a bit of a boost. Best wishes to anyone reading this and good luck!


@Fragileuk, thank you so much for taking the time to share this. It’s so great to hear about your journey, and we’re really pleased you’re doing okay now. If you do ever want to talk your experiences through or need some support do know that our Support Team are here (Blood cancer information and support by phone and email | Blood Cancer UK).
Best wishes,


Wow @Fragileuk, what an inspiring story. I was treated for Acute myeloid leukaemia (AML) in Scotland too (at the Beatson and QEUH) and was told I was the “most well person ever” on the vyxeos chemo! I was quick to recover after the first round (28 days) but only had 2 rounds as took about 60 days the second time. I had a Haplo transplant from my daughter in April 2022 and I am back to my old self although I also struggle with planning ahead, after an instruction to go to hospital immediately made me realise how quickly plans can be ruined.
Enjoy the wedding and your holiday xx


Thank you so much for sharing @Fragileuk.
How amazing that you have come from being so poorly to being discharged. This is such a positive story and will help a lot or people X


Hi @Fragileuk A great big welcome and thank you so much for taking the time to post your inspiring story, and what a story it is.
I understand what you say about your background meaning that you did not want to go down a worm hole of research.
Yes, it really is a psychological battle, well described.
Have a brilliant time at your daughters wedding and then you also have a winter holiday to look forward to.
Please do keep posting and really look after yourself