Aml and sct

Hi Alron and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I keep an eye on our various Blood Cancer groups.

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

I also know the Allo (donor) SCT journey rather well as I have actually had 2 Allo SCTs the first in June 2014 with my second in Oct 2015…… 

My story is rather complicated but you can See my story here in my profile where you will see I had a bumpy ride after my second Allo……….. but I am over 9 years out from my last treatment, I turn 70 this year and I doing great.

You may find some of our ongoing threads helpful….

Life after a SCT - A Survivor's Guide where we have tried to collect or post treatment experiences.

Late effects and problems where we look at issues further down the line post SCT.

I see you have joined the Stem Cell Transplant group….. but most people move on with life after completing SCT so the group activity can be on and off.

Many thanks for your reply, I had just finished your story, what a trip you have been on! Hoping to post a few queries in the forthcoming days about treatment and recovery.

We all do what needs to be done

How are you getting on? 

Still here after a very difficult second transplant, discharged from hospital then had to go back in, now discharged again, hoping to catch up on writing my blog in the next few days, thank you for your interest.

Glad to hear it, 

I was asking as I may need a sct this year and am very worried about what that looks like. 

Hi Alron.. just been reading your post, hope you are feeling ok. My story is a bit similar to yours.  I had my stem cell transplant in April 2024. I was diagnosed with AML October 2023... and what followed was  multiple chemo treatments over several months before the transplant April 2024. I have luckily been feeling mostly ok apart from lack of concentration and getting things done takes longer than it used to. My consultant has suggested I may need a DLI to top me back up to 100% donor cells as the percentage has dropped slightly..  The process sounded quite straightforward .. no chemo just a small quick top up infusion.. how was your experience .. I would rather avoid unless absolutely necessary.....

Hi, good to hear your progress, I had three Dli's, the first is just a small injection after a conditioning fluid bag, whole thing took half hour and was easy. If you need further ones they increase in volume and are given as infusions and take longer each time. Unfortunately even after three my chimerism kept dropping hence a second transplant. It was unusual though as Consultant said most Dli's work fine so pleased don't be put off!

Alan

Hi Alron I will be having my first DLI in about 2 weeks …sounds quite straightforward in theory as you know may need multiple DLIs to make a real difference. Hope you are doing okay after your second transplant.

best wishes 

John

Hi JohnJohnnylond although I have/had 2 rare Lymphomas and ended up having 2 Allogenic SCTs (June 2014 then Oct 2015)……

I had a 2 DLIs for my first Allo SCT and even although my graft was 100% donor at about 4 months post SCT I was told on Christmas Eve 2014 that the graft had failed.

My post second Allo SCT (Oct 2015) was complicated (see below) but I am coming up to 11 years post SCT and doing great..

Day 85 - 196..... skin GvHD so Cyclosporin was continued and slowly reduced over time

Day 98 First Chimerism 39% Donor

Day 112 First DLI

Day 133 Chimerism 42% Donor

Day 154 Second DLI

Day 183 Chimerism 40%

Day 196 Cyclosporin stopped

Day 224 Chimerism 38% Donor

Day 245 Third DLI

Day 275 Chimerism 43% Donor

Day 284 GvHD in bone marrow - Blood transfusions for three months

Day 304 Fourth DLI

Day 328 BMB

Day 345 Chimerism 60%

Day 345 Remission and NED (No Evident Disease)!!!!!

(Could never understand this one)

Day 401 Chimerism 55%

Day 422 Fifth DLI

Day 478 Chimerism 65%

Day 562 Chimerism 68%

Day 618 Chimerism 59%

Day 644 …… my Whole Blood Lymphoid and Myeloid Lineages are 100% Donor

18 June 2018 - Discharged from SCT Consultants care (32 months post second SCT)