MDS stage 2 / AML KMT2A

[Sjbtaylor]

Hi everyone,

I have been reading forum posts in the background, trying to build some reassurance that all will be fine.

I was diagnosed initially with Myelodysplastic syndrome ('MDS') 18% blasts. Admitted to NUH to begin Flag-Ida.

When the NGS results came back it confirmed I had Acute myeloid leukaemia ('AML') 20% blasts with the NRAS and KMT2A -PTD mutations.

I completed my first round of Flag-Ida on 12th August and blood results recovered really well. Unfortunately I have been told that I am not in remission. The blasts reduced to around 8-10%.

Whilst I appreciate this is A reduction, it’s not what we were hoping for. My mutation is known to be resistant to treatment.

I’m 39 and otherwise healthy. They will be altering the chemo for the 2nd cycle but now I’m concerned it won’t work and I won’t get to Stem cell transplant.

Any experience out there would be welcome.

[DuncanB]

Hi @Sjbtaylor and a warm welcome to the forum.

You’ll find people on the forum who really understand the realities of living with blood cancer.

I’m sorry to read about your diagnosis and that Flag-ida didn’t deliver the blast count reduction you and your team had hoped for.

I was diagnosed with Myelofibrosis which progressed to Acute myeloid leukaemia ('AML') aged 59 in October 2023.

Like you when blast count was over 20% I was admitted and had Flag-ida.

For me it barely moved the dial so the hoped for Stem Cell Transplant in spring 2024 was off the table.

I was then put on maintenance treatment Venetoclax and Azacitidine which eventually got me to a point where I was offered a Stem Cell Transplant again. Thankfully anonymous donor still able and willing to donate cells.

I had my Stem Cell Transplant April 2025 and doing well 17 months on.

So message is try to remain positive as there may well be other ways they can get you to a point where Stem Cell Transplant is an option.

Take care

[Duncan]

Hello there @Sjbtaylor, welcome to the forum at what sounds like a difficult time. I’m really sorry to read of that initial Myelodysplastic syndrome ('MDS') diagnosis leading onto an Acute myeloid leukaemia ('AML') diagnosis. I’m glad you found the forum reassuring and please know you’re not alone with your diagnoses nor treatments here.

I’ll share the Blood Cancer UK and Leukaemia Care information about Acute myeloid leukaemia ('AML') here for your reference, do have a look through for further information: Acute myeloid leukaemia (AML) - what it is, symptoms, tests, treatment, prognosis and support. | Blood Cancer UK and Acute Myeloid Leukaemia (AML) | Symptoms and Treatment | Leukaemia Care - Leukaemia Care

I see dear @DuncanB has shared experiences with his initial diagnosis progressing to Acute myeloid leukaemia ('AML') and treatments and would urge you to read more of his posts as Duncan has kindly shared how he got to stem cell transplant and beyond.

If you’d like to find others around the forum who have similar experiences of disease progression, maintenance treatment, or indeed stem cell transplants then the search box at the top is real helpful.

Here is a thread where 2 dear forum members have shared day-to-day posts about their stem cell transplants, admittedly for different diagnoses to you: Cyclophosamide priming

Speaking from experience of being diagnosed with a related myeloid blood cancer to you, my haematologist reminds me that youth is on our side and keeping active and healthy alongside treatments are some of the best ways we can tolerate these blood disorders.

Also in our favour, according to my recently trained specialist, is the rate at which research is finding new ways to treat blood cancer, within our lifetimes. In just the 3 years since my diagnosis with Polycythaemia vera ('PV') there have been new treatments approved for it around the UK, so I hold out hope for further advances.

We forum member can’t really speak to the medical aspects of our diagnoses, but the lovely Blood Cancer UK specialist nurses can. If you’d like to talk over anything medical or to find further resources just give them a free call on 0808 2080 888.

Hope that helps a little @Sjbtaylor, do keep looking around the forum and please feel free to reach out to others. We’re a friendly bunch and I’m sure others would love to share tips and experiences with you.

[Byrnebaby]

@Sjbtaylor welcome to ‘our’ world, where you will find nothing but love and support as shown already by @DuncanB and @Duncan and I must say @Duncan post felt like the warmest hug ever!

[Duncan]

Aww that’s very sweet of you dear @Byrnebaby. Funnily enough I just pointed @Sjbtaylor to your lovely long thread for your kindly tips!