Dad has acute myeloid leukaemia

[ilovearcticroll]

It's not a good prognosis for someone his age-no treatment unless he gets on a trial. Kind of expected him to get to his nineties like my grandparents and certainly outlive my mother who has numerous health problems.

Does anyone have experience of this and what it's like? Diagnosed yesterday. He had a blood transfusion today which should make him feel better (haemoglobin was 8 and should be nearly double that). Will hear about trial after they discuss his case, but otherwise this is an aggressive, fast moving leukemia.

Even though there's been lots wrong with our relationship, l feel sad. He loves us and is kind and supportive, even if not always in the way you'd hope!

Hi all, I really, really appreciate you sharing your experiences - especially when they sound so hard.

Heard from Dad today. He is very unlikely to get on a trial but will be confirmed when they know what mutation exactly he has.

The consultant and the other person with him was absolutely lovely but also very real about how bad things are. That said, when dad said it's as bad as it can be, I was expecting him to be days away fro dying. His prognosis, as uncertain as these things are, seems to be likely to be 3-6 months.

The doctor was also very skilled at managing dad's expectations about moving house (talked out of it), and at understanding his wider needs which include the fact he is main carer for my disabled mother.

We will see how things go, but assuming none of us gets ill and he has to avoid ill we are expecting him and mum to come for Christmas.

It is awful, but at the same time, it isn't probably quite as sudden as I'd feared, and he is getting the best advice he can, both medically and with managing the time he has left.

So sorry to hear that my friend hasn’t made it to Christmas.

I would try and really focus on trying to make it a special Christmas

Oh, I'm so sorry for your loss Starlight. We are definitely doing just that. Mum and Dad are staying two nights in Travelodge (we just can't cater for their needs overnight here) and my youngest and I have just been getting goodies together (hot choc, Christmas mugs, biscuits, that sort of thing) and hope the Travelodge will let us leave it in their room for when they come. Then there will be ten of us for lunch including my sister and parents in law, and have planned lots of treats.

I'm hoping it will be lovely, and just praying no one gets a cold before then as dad really can't be around viral infections.

Of course, there aren't many silver linings with this, but my dad has always been very sensible with his diet and I hope this year he'll have that extra chocolate or mince pie and just enjoy. And because we can be pretty sure it's his last, we will be trying to make it special, even if his fatigue means most of it might be spect asleep in a comfy chair.

We're all only human, and our family is tricky, but hopefully, even within that, we will focus on the right stuff.

Thank you.

I had virus so was unable to visit my friend at the end. The difference between my two friends was the friend with cml . I got to process it, time to just be together , did some things together , friend with AML too fast to process.

It will be a bittersweet Christmas for you . You will be in my thoughts

Gosh, that's so tough. I'm on tenterhooks to get everyone to Christmas without being ill. But I guess what will be will be.

Youngest asked me today what happens at a funeral. She's been very sad about the news, but I think is processing it all pretty well.

Oldest had a bit of a paddy today about my sister coming to stay Christmas Eve and I think it will be tricky at times over Christmas because we aren't doing things quite how we usually do. My parents aren't the easiest to spend lots of time with - people don't suddenly change because they have a terminal diagnosis-and oldest is the only one that has really realised the challenges.

How are things ilovearticroll? I hope you managed to have a lovely Christmas with your dad

Ah, thanks for asking, JackRusselsAreCute. It really, really was lovely. We went a bit overboard on hygiene to make dad feel relaxed-anti bac wipes and hand gel everywhere, and my sister came, which is very unusual.
Dad had a bit of a moment when the children had their gift of theatre tickets for April (booked before he got ill) and we went out and had a good old hug and he had a few tears. He was also a tiny bit sleepy, even for 85. But apart from that, it was just very, very loving and kind and fun.

And we had a two hour plus journey on Boxing Day to talk to him and mum about options for mum. No one needs to decide anything, but I needed them to know what help we could give so they can plan a bit if they want to.
Dad has blood test on Monday and his levels weren't bad enough to need another transfusion, which is positive.

Good news about the blood levels, hopefully he may be stable for a little while

Got to hope. But be prepared too, I guess?

Dad has had good news again about his haemoglobin levels as there has been no change in two weeks. I know this could change rapidly but for now I'm grateful that he is feeling pretty well and hasn't needed a transfusion since before Christmas, and that one was his first.

I'm so glad he's doing well.

Hi OP I'm so sorry to hear about your dad. How old is he? I didn't have AML but had another type of blood cancer MDS which would over time transform to AML. I was 50 when diagnosed and was able to have a stem cell transplant. My haemoglobin, neutrophils and platelets were all very low before my transplant and I needed weekly transfusions. I found the Macmillan discussion forum on their website very helpful. Also I am on a Facebook group where there are many who have or have had AML. I will give you some info for these.......

The Facebook group is called:

Bone Marrow & Stem Cell Transplant Patient Support

Even if your dad is not having a transplant, the group will still be helpful and supportive to him or for you

The Macmillan AML discussion forum link is:

community.macmillan.org.uk/cancer_types/acute_myeloid__leukaemia_myelodysplasia/discussions

Ah, thanks MyNameIsArthur, really helpful. My dad is 85 so can't have treatment for the AML itself, just transfusions and antibiotics. He's doing okay so far-especially since he's had two weeks of stable haemoglobin. And of course, he's had 85 cancer free years before diagnosis.

I'll pop on those sites and have a look. Finding things like that helpful, although it does seem that these things are very person/age/mutation specific so trying not to read someone else's experience and imagine dad's will be the same.

How are you doing after stem cell transplant? Hope it's going smoothly for you and thanks for the info.

Hang in there - this is what dad had and I know it sucks.

Oh gosh, LordFrontPaw, sorry if I've misunderstood, but when you say had, did you lose your Dad? If so, I'm so very sorry. If you say had because he's well now, then I'm glad for you.

I'm now not so worried as I was about this bit-dad tired, but otherwise just as he was and I have to remember that he is 85 too. But I am worried about he he will be when he gets more ill and how much he will suffer. I haven't had someone close to me be seriously ill before. ☹️

This was a while ago now - pushing 17 years (he was in his 70s)! I didn’t want to be a gloomy gus - just wave a paw of support and say ‘I know how you feel’.

He didn’t suffer, just mostly tired and a bit weak after chemo. He was still his usual self though - it didn’t change his character like some can (if you know what I mean). The last think he said to me was ‘hahahahaha, snigger’ and I have no idea what about (I think he was just please to see me).

So sorry for your loss. I so appreciate your post. I had hoped that that would be how it was. He certainly isn't any different yet-just a bit more like a normal 85 year old instead of doing masses of DIY jobs and things for other people! And, in a way that's reassuring, he still annoys me in the same ways! Hope that doesn't sound weird-I appreciate home just a bit more but he hasn't suddenly become some odd, saintly version of himself!

My DH died from AML. Like Northumberlandlass' story above, he was treated, put on a trial, got into remission but a year later it was back with a vengeance. Although a bone marrow donor was found, it was too late to have the transfusion. DH was only 48 and pretty healthy and fit up to that point.

The treatment is gruelling - it took away his enjoyment of life as he was on a constant cycle of chemo, hospital stays to protect him from outside germs, waiting for white blood count to be up, then home for a fortnight before the next round of chemo.

McMillan were great, definitely worth speaking to them for advice, but even though your dad may not be able to have the treatment, the pain relief will keep him comfortable for however long he may have left. That is honestly preferable to pro-longing life through aggressive chemo where he is likely to feel crappy for the sake of a few more months.

Big hug to you and your family.

I'm so sorry about your DH, Spickle, and really appreciate your reply.

I am definitely relieved he's not going to be offered treatment with limited chance of success. At the moment, he's a bit breathless and tired, but otherwise, himself and doing stuff. I know that will change, and could change quickly, but am very aware of how ill he could be feeling.

I am not sure whether I am in denial, but at the moment, given that he's nearly 86, I am feeling that his wish not to be long term incapacitated and unable to do stuff he loves is likely to come true and even though I know he will be ill, he won't be ill long term. I hope it doesn't sound un loving to be grateful for that.

Gosh. Another level of reality reached today. Spoke to dad on phone today. Sister, mum and I are to be given power of attorney over health issues-DNR and that kind of thing. Trying to understand whether what I feel about this stuff now will change when the reality of dad dying comes closer.

Dad had to have two pints of blood yesterday, but that's the first since well before Christmas so I'm not surprised. Didn't make him feel as well as the last lot, but I think the last transfusion was extraordinarily effective!

ilovearcticroll I do hope your dad is now feeling a little better after his transfusion. It's awful watching loved ones go through all these necessary treatments, but the aim is to make life comfortable and pain free for as long as possible, for the patient as well as close family and friends. That's important because your dad's quality of life will be much more fulfilling to you all for the days ahead.