New member , husband has aml

Hi Sparky29d6a335 and welcome to this corner of the Community although I am always sorry to see folks joining us and to hear about your husband.

I am Mike and I keep an eye on our various Blood Cancer groups.

Sorry for the delay in putting up a reply but I wanted to see if any of the group members picked up in your post first.

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 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 Allograft (donor) Stem Transplants (June 2014 then Oct 2015) with cells from my big brother….. the main reason I had to have 2 Allo SCTs was down to the complications of treating to very different types of rare Lymphomas at the same time…….

My first Allo SCT was basically a trial as it was a relatively new approach but failed within 6 months…… but I know people in the same position as me who did have success with the new approach and are doing well - so the lessons that were learned in my journey helped them. …….. the second Allo SCT did the job………. you can see my long story in this LINK

But I turn 70 in a few weeks and I am coming up to 10 years since my last treatment and living a great life.

Let’s look for group members to pick up on your post and get back to you.

For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing.

We also have a dedicated Stem Cell Transplant group where people from all blood cancers share their SCT journey…… the group can be slow at times as people do tend to move away from the community once their SCT process is completed and they look to move on with life.

Always around to help more or just to chat

Hello Sparky ,I’m sorry for your husbands diagnosis. I too was diagnosed with aml in 2018 aged 61. I also had the npm1 marker, after a difficult summer of 3 rounds of chemo I too was in remission. The consultant decided not  to transplant ,however after 5 months I relapsed and I had a bone marrow transplant in. May 2019 . It was a tough year but after about 10 months I started to feel normal again. Life has been pretty normal since, back doing my normal things. However last November 2024 I was told I had relapsed with MDs., still in remission for aml. But my donor levels ( chimerism) were down to 30%. Relapse to aml would probably happen. They contacted my donor and I have had 3 T cell top ups ( donor lymphocyte infusions) to try and kick start my bone marrow. Yesterday I had a phone call to say my donor level is back to 100% !! And no evidence of leukaemia!  I hope all goes well for your husband , there are plenty of successful stories out there x Mark

Great update parkrun mark 

Hi Sparky29d6a335,

My wife has been diagnosed with AML developed from MDS. She is in hospital this week and is having one cycle of chemo Days 1,3&5 and she has had the first two and waiting for the third. Everything is going OK no side affects thankfully

I feel the same, alone disbelief in what we are told my wife keeps asking if she is going to die and will I be cured. All the signs are positive but we botj feel anxious.

I have been at the hospital every day s8nce admittance from 9:30 til 7:30/8pm to keep her mind positive but feel drained am not sleeping and scared

Happy to share emotions

Merse1806

Good morning Merse1806

Lovely to hear from you. 

My thoughts are with you and your wife during this difficult time . 

It is so hard to keep both yourself motivated and your wife . Myself and my husband have been in hospital since July , he is currently on the 3rd round and waiting for his netra levels to come up so we can get him home for a week before the next round starts. 

Like you , I have been visiting every day but I have to be honest , many friends and family kept saying to me to take time for myself and I would feel very guilty knowing he was alone and isolated but eventually I gave in and decided this month  to spend the mornings doing things for myself and visiting after lunch and it has been such a relief,  it allows my husband to have his time getting ready for the day and we look forward to seeing each other much more . It is very hard but you can't run on empty for long and you need to be strong for yourself and your wife . 

I'm not sure where in the world you live but if you have access to a Maggie's centre please use them , I was very anti when this all started and thought " i don't need to hear or speak to others " how wrong i was . I caved one day exhausted mentally physically and emotionally and a lovely bloke called Mike , just listened whilst I sobbed , the weight lifted just talking to someone who didn't know me or the circumstances was huge . 

This month has been long and hard as my husband had an infection so back on meds for anti this and that and for me  its the not being able to help or take it away but actually just being with him is more than enough 

We are in the laps of the god for a donor now which isn't looking good at this year but we've talked about this and been very open and honest with each other and decided rather than worry about things out of our control to focus on our time together and bloody enjoy it whilst we can .

Hoping that you do get some sleep and I completely understand being scared . 

Always here to chat  xx 

Hi Sparky

Thank you so much for the reply and happily chat whenever you can. 

Yes its hard for us but feel we have to be strong for the partner. But we need the strength and positivity to keep them going and more importantly keep us going. 

I thought I was strong but never realised i could support her in this way. I cry when I am not with her as I mentioned I am scared more about the unknown but the doctors are positive.

Today is the third and final round of cycle 1 and then the dip in blood counds, platletts and hair loss starts and she is anxious amd i am scared for her.

I dont get time as my wife is "me needy" wants me there from 9:30am til 19:30pm so i just try to keep her positive. I have to work and they have been brilliant but i do not want to be seen as a freeloader but they are fine which is a weight off me.

I live in Brighton area so Macmillion has been a comfort during the time in the hospital and on here.

Keep in touch, be positive and we will get through this

️️Merse