Hi,
Long story short but my Dad was diagnosed with MDS back in March 2022 and was going for regular blood transfusions. Then in August he had a phone call after one of his routine blood tests telling him that he needed to be admitted to hospital due to some alarming results.
Thats when we found out that he had developed AML (Acute Myeloid Leukeamia). He went through around 3 rounds of chemo and managed to get levels low enough that by December he was having a stem cell transplant thanks so an incredible donor. His siblings weren't a good enough match so it was from an unrelated donor who was a 12/12 match so all looked positive. It was stressed how high risk the transplant would be due to Dad having the underlying MDS and also the FLT3 genetic mutation.
Since transplant, Dad did achieve remission which is amazing. However, almost everything they warned you about happened. Within a few weeks he was in ICU with sepsis and kidney failure. Miraculously, he pulled through this. He then developed GVHD of the gut, skin and mouth. The gut has had him back in hospital multiple times and since his initial admission in August he pretty much resided at the hospital and his personal best for being at home was around 8 weeks.
His chimerism levels after SCT reached 100% and we were thrilled to hear this. How ever due to all the complications it doesn't seem like Dad ever got to feel "better" since all he's been through. In actual fact he's been more poorly mentally and physically since SCT.
During one of his regular blood reviews his chimerism had dropped to 90% and when they retested it was down to 54% so SCT had started to fail now in July after the 6 months. He was booked for an emergency bone marrow biopsy and our worst fears were confirmed Friday that the leukaemia is back already. We were told he would relapse but imagined it would take longer and that he would have better quality of life before this happened.
In terms of treatment options, because the GVHD is now affecting his liver and so rife everywhere else he wouldn't be eligible for a2nd SCT. they've ruled out donor lymphocyte infusion because this would now be fatal for him. They may offer him a course of gilteribinib (he took this before SCT and it was only effective for 4 weeks). This is all based off of the interim result. We get the full bone result back Friday which will confirm any cryogenics and mutations etc. But based on the info so far he's been told he could have 6-12 months.
We are absolutely devastated and whilst completely grateful for the extra time we've already had, just struggling to process this change. Just feels like with the additional time he's had since December he's spent most of that in a hospital room and in isolation from friends and family and so cruel that it's already back. He's been told to go and enjoy life and do what he wants to do.
Just wondered how has anyone else coped on this type of situation and does anyone have any advice.
Thanks x
Hi Bubbles23 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I'm sorry to read that your dad has been diagnosed with acute myeloid leukaemia and I know what a difficult time this will be for the whole family.
The online community is divided up into different support groups so I'm going to recommend that you join the acute myeloid leukaemia group, which is a great place to ask questions and share experiences about treatment, and also the family and friends group, which is safe and supportive place to discuss your worries and emotions and get support from others who have a loved one living with cancer.
To join these groups, just click on the links I've created which will take you straight there. You can then join and start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could pop something about about your dad's diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
If you have any difficulty navigating the community just drop me a reply and I'll be pleased to help
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Thank you so much for the advice. I've joined into those groups now and will look at updating my profile 
Really appreciate the help.
Hi Bubbles23 just dropping your in past after reading your post.
I have another (rare) type of blood cancer (CTCL) and I have had 2 Allo (donor) SCTs……. The first SCT failed within 6 Months but as there were no other treatment options we went for a last throw of the dice and did a second Allo SCT and so far so good.
Do post in the AML group as there may well be folks with the same experience. We do actually have a dedicated Stem cell transplant support group but as a second SCT is not being seen as a possibility it may not be useful for you to post in there but you can have a look anyway ((hugs))
