Aml-relapse and sct

Angel82 4 hours ago

2 replies
9 subscribers
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Good morning all, I am new here!

I was diagnosed with AML in September 2024, 2 big rounds of chemo b and 2 condolidation treatments later I was discharged in may 2025 in remission.

I'm 44 single mum to 3 kids, going through a divorce and this has been so hard. But since I've been out kids have been slowly healing, getting back to being kids, socialising, doing better in school etc.

4 days ago I got the dreaded call that my MRD test is flagging positive. I know from previous conversations with my consultant that sct may be next steps, but without my father, mother or any full siblings I know this may not be easy.

I've read alot about flag Ida don't know what this is. Anyone got any advise, help, positive stories, anything for me? Would really appreciate a chat with anyone with experience, my mind is going wild, I'm so worried atm.

Look forward to hearing from you.

Jody

Thehighlander 1 hour ago

Hi Angel82 and welcome to this corner of the Community although I am always sorry to see you here.

I am Mike and I keep an eye on our various Blood Cancer groups as well as this Stem Cell Transplant group.

I don’t have Acute Myeloid Leukaemia (AML) but for context I have been on my journey since 1999 when at 43 I was diagnosed with my first rare (8 in a million) ‘incurable’ but treatable type of Cutaneous T-Cell Non Hodgkin’s Lymphoma (NHL)……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL was then presenting so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well…….

Especially as I have had 2 Allogenic (Donor) Stem Cell Transplants (AlloSCT for short)…… my first was in June 2014 with my second in Oct 2015.

I see you have been posting in a number of older discussion threads…… let’s see if the members are still using the community. Many people move away from the site once they complete treatment and get on with life.

This is very early on after your call so I am assuming you have not had an in-depth discussion with your medical team as to the way forward……. let alone a SCT team.

FLAD-Ida is just one of a number of drug combinations used for Leukaemia…… I had totally different drugs because I have Lymphoma…. the aim of these treatments is to get you into a position to be able to go on and have a SCT be it an AlloSCT using Stem Cells from a matched donor…… or an Autologous SCT (AutoSCT) using your own ‘clean’ harvested Stem Cells…

When are you meeting your clinical team next to get some clarity?

I will say that I am 10 years 8 month out from my security AlloSCT, I turned 70 last Nov and I am living a great life.

Always around to chat.

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

See my story

Fulhamboy 24 minutes ago

Hi Angel82

My wife went on this same journey you are sadly to yourself. She was diagnosed with AML in Oct 2018 aged 64, had 4 rounds of chemo and then flag Ida. remission was achieved following months of treatment but sadly she relapsed in Dec 2020. Then was put on outpatient chemo treatment and awaited an allogenic SCT which she had in Aug 21. Now, almost 5 years on she's fit and well. She was so lucky no GVHD or any further hospital admissions or anything serious following the SCT

FLAG IDA is a very powerful drug used for the treatment of AML and has permanent side effects but don't worry they are minor in the whole scheme of things. The main one being that you will need to be aware that any future transfusions you have following the flag Ida will need to be irradiated.

You will get through this Angel82, stay strong and positive. Wishing you all the best.

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