Terminal AML diagnosis

Hi LeeBee and welcome to this corner of the Community although I am sorry to hear about your husbands diagnosis and prognosis. A cancer diagnosis like this in the family can be such a stressful and challenging time but I do hope you will find the community a safe place to get support and ask your questions.

The nature of some of these aggressive blood cancers like AML can unfortunately result in the position your husband is in. It’s very hard to comprehend how quick things can develop.

This is a very difficult time for you all, I am not aware of any other members going though this at this specific time at the moment as most folks move on to our other general groups but let’s see if someone picks up on your post. I will however recommend that you consider joining and posting in our general Carers only and Supporting someone with incurable cancer groups.

These groups are a good place to connect with others who are dealing with all the practical and emotional challenges of supporting family on a journey like this.

If you'd like to connect in with a group click on the Green (Bold) link(s) I have created above. Once the group page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."

You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go. You could copy and paste the text from this post into your new post.

Macmillan have many support services so do check out the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. These services provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing supporting all the family.

Give me a shout if you need further help.

All the very best ((hugs))

Hello LeeBee,

In a similar situation here, I am a husband, 73 yrs old, with AML  and with a caring worried wife as are you.

Was told in July 22 that there is no more treatment  for the haemotologist  to offer.. Cytarabine and Venetoclax for 5 months prior had stopped beng effective. Then I had one round of strong chemo FLAG-IDA which didn't change my bone marrow situation - but it did make me very poorly with sepsis for a couple weeks after. I was so glad to return to a healthier condition.

I, we, have  been through all kinds of different emotional reactions, have settled that for both of us a near normal routine is seeing us through  at the moment. Sure there are the dark times, expressed in different ways by my wife and I but we can see no other way to get through this period.

The shadow sits in our mind constantly but by staying busy, and to ourward purposes, normal, the demons are kept at bay. This isn't ignoring  the threat, for there are almost daily reminders in various medical guises. It is nice though to get temporally fully occupied by something of interest.

We do hug a lot more. 

I am sorry that you both are in this AML situation and hope you can find a way through that suits you both.

KInd regards and Love,

John

Thanks for your support and I have joined the carers forum asyou suggested, thanks Mike

Hi John, thanks for your reply. It's such a difficult time.... in limbo really as have taken some time off work but feel like we're in God's waiting room! I know he could deteriorate quickly so am trying to make the most of every day but feel sick and tired all the time. We are hugging lots, shedding tears together and sorting our paperwork. It still feels unreal though... stay well x

I am 46. Was diagnosed with AML in May 22. Had 5 cycles of chemotherapy but didn’t achieve the minimal residual disease required for transplant so there is nothing left for me except the clinical trials. I feel apathetic. I don’t feel depressed but i don’t feel like doing anything… what is the point? I am just very sorry for my family. I also don’t want to disappoint them by being lazy. I would like to meet someone that is going through the same as me so we could share our thoughts and feelings. I feel isolated and don’t even understand what I feel. The doctor told me I may live one more year and that is it.

Hi Catarina and welcome to this corner of the community but sorry to hear about how things have developed for you.

Let’s see if any group members with a similar experience is looking in and will pick up on your post.

You may also want to consider joining and put up a post in our dedicated Living with incurable cancer - incurable patients only support group

To widen your support do check out Leukaemia Care UK who run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444

The Macmillan Support Line is open from 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 where you can talk with someone about specific cancer and practical information, get emotional support, benefits/financial guidance or just connect with a listening ear.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and aim to give support to all the family.

Always around to help more or just to chat ((hugs))

Hi John, how are you getting on? Sorry to say my husband passed away on the 25th of September at home. He had been told 4 months but it was 3 weeks. He told me he knew he was dying and was ready as he was so tired. It's heartbreaking to hear this but he passed peacefully in his sleep which was the only blessing. I'm trying to cope with everything but it's very difficult still. I hope others have better outcomes

Sorry to hear your news LeeBee my sincere condolences

Hi Catarina, Sorry to hear about your situation. I was diagnosed with AML back in June 2021.  Had 4 rounds of Chemo and then went on to have a transplant in Feb 2023 with the levels not as low they would have liked. 2 months later they decided that the transplant hadn’t worked and I got the “Terminal” chat from the consultant  …. No indication as to life expectancy other than could be as little as a few months. Ended up on a course of Gilteritnib which has kept the disease under control up until now.  So now I’m looking into the Trial options I know it’s prolonging the inevitable but I’m hoping that I will be accepted on a Trial. I’m hoping to buy enough time to be able to get our kitchen refurbishment done!  I’ve found having a focus and a goal good for the spirit. Also as it’s a trial it may benefit others in the future which is some comfort.  If you can keep going for as long as you can who knows what treatments may be in the pipeline!  

Hi Catarina, My wife was diagnosed in Dec 21 (at 41) and went through chemo and stem cell transplant in May 22. We initially had the all clear but unfortunately the transplant failed and the AML came back. Despite the Venetoclax (only managed 2 cycles) we've been told that it's not working and there is nothing else that can be done. It's been a massive shock to both of us but, speaking as the support for her, I know she feels the same way and I am always telling her that she can never disappoint me - and she never will. I am sure your family feel the same way towards you.