Aml-relapse and sct

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.

Always around to chat.

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.

Thank youThehighlander and Fulhamboy (ae7972bdb86e427799430e8837669128), II really appreciate your taking the time to message me.

I'm glad there are some positive stories out there to pull from. Alot of what you read online can seem so negative and last time I didn't really use these platforms for fear of scaring myself, however, now with one set of treatment under my belt that hasn't worked I'm worried and feel like if I don't talk to people I will lose my mind.

What can be expected from the Flag Ida? What type of treatment is it? And that is a long time to wait for a SCT is this a normal length of time?

I'm assuming in this time frame you can't work or anything either. 

Thank you again for your time and apologies for the number of questions. 

Jody

Hi again Jody Angel82  I am glad that Fulhamboy  has picked up on your post as he and his wife has good first hand experience of the SCT route including FLAG IDA for AML.

I can only relate to my SCT journey….. Due to me having to be treated for my 2 rare T-Cell NHLs at the same time my main treatment journey from late 2013 to late 2015 was rather complicated (See my full story) 

Time wise it can be ever so different from case to case…… for my first All SCT I finished my salvage chemo (the chemo used to open the door for having a SCT) on the 26th April 2014 and was in the SCT Unit starting the process on 1st June 2014…… and I was in the unit for 28 days……

My recovery was very quick….. to the point I drive the 3 hrs home from Glasgow to Inverness…… this had been expected due to a very new approach for my type of Lymphomas but unfortunately the graft failed - I was told this on Christmas Eve 2014…… but I had been warned that this may happen due to this being a trial.

I was put on Active Monitoring and had some maintenance treatment then went back and had my second Allo SCT.

I had to have a lot of Radiotherapy (due to my type of Lymphomas) so my wife and I were in a hotel next to the Hospital in Glasgow from 23rd Sep to 7th Oct then I was in the SCT Unit from 14th Oct to 10th Nov

The important thing to remember is that my case is extreme…… but all in all it was do-able and on reflection worth every minute ((hugs))

HI Angel82

Flag ida is quite brutal tbh but please don't let that put you off as it is a vital step on your journey and,a means of getting you back into remission before your sct. The time dependency for your sct will depend on your progress and your blood results and biopsy results. Once you are stable the programme will start but it can take a few months. Your team will be,able to give you far more details. Regarding work, flag Ida takes a lot out of you, you will not feel like working at all apart from the fact you will be in hospital for a few weeks. Following that and remission is hopefully achieved you nay feel like working providing you feel well enough before your sct but check with your medical team.

Thank you for your time, really appreciate the support. 

No problem 

Please do come back and ask anything you feel you would like information or help with. I will be more than happy to help if I can.

FULHAMBOY