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!

didn't want to read and run. No advice but here to listen anytime

I'm sorry to read this, I hope that you are getting plenty of support. My dad has blood cancer and McMillan have provided good emotional support to us

My husband’s mum died from AML. She’d had breast cancer about 15 years before which was treated with surgery and radiotherapy. There’s a good chance that the radiotherapy could have caused the leukaemia. I’m so sorry you’re going through this. It’s such an awful disease. I’m not sure what advice or information I can give you as I don’t know what you want to know. Thinking of you and your family

Thanks, all. I'm not sure I know what I want to know either! I guess I'm struggling to find an accurate ball park prognosis for an otherwise fit 85 year old and not sure whether to accept "days or weeks" or "a couple of months" but I know it's not long. He might be accepted onto a trial, but that's being discussed at panel next Wednesday so won't know until he sees consultant the next day. Could it be as quick as days? Surely they'd have told him if so, and he would have told me (very pragmatic ex doctor). I feel I should go and see him as soon as I can, but can't drop everything easily.

I can't help but wanted to know I'm in the exact same position only my dad was diagnosed with it two weeks ago. They weren't going to offer any treatment but since decided he could enrol on a clinical trial which he starts on Friday. They've given no timescale but have said they can't cure him, just looking at prolonging his life. It's horrible.

I’m sorry to read about your DDad

I have CML, which is totally different in terms of treatment options and prognoses, but I do know my way around haematology a bit.

Do not google! There is loads of older, scarier info still lurking online. If you want to read up, stick to reputable sites such as Bloodwise, CRUK, Leukaemia Care or Macmillan.

Remember that prognosis/longevity figures are massively skewed by age at diagnosis - the older the person the more chance they will have other Stuff go wrong even when their blood cancer is well controlled. If you look at the five year survival rate of all 85yos, you might find really not that much difference to 85yos with blood cancer and again 85yos with AML

That said, the treatments for AML can be quite intensive and that will demanding for your DDad and you his family as his supporters, do see if there is a local cancer support centre to you which can offer or signpost support services

Who is going with him to next appointment? It’s quite likely he will need further tests, and for some (such as those where they need to grow cell lines do they can test for specific mutations) it can take 3-4 weeks for results. The period of uncertainty can be one of the most stressful parts. Once you know what you are up against, and what the doctors recommend, then it can (bizarrely) get a little easier as you a get on with it,

and I hope your haem team is confidence-inspiring

Crankyhouswife it is horrible, isn't it? The only positive I can think of is that my dad would be driven to distraction by infirmity or losing sight etc and he won't face that now. And he won't get dementia, which is one of his fears. He's obviously having tiredness and breathlessness symptoms, but he drove to and back from Cornwall a couple of months ago, at 85!

IVampire, sorry about your leukaemia too. Horrible. Rang Macmillan yesterday. The stats i'd got are correct, but what was helpful was finding out I'd not done things wrong with the children by telling them and she also confirmed the potential shortness of timescale if he doesn't successfully get treatment on the trial. And, as I'd hoped and expected, the nurse was very kind and sympathetic without being fluffy.

My grandad has this. He was diagnosed at nearly 20 yrs ago. He is now 81. For most of this time he has been very well but in the last year he had been diagnosed with skin and prostate cancer but these are under control at the moment. He has had times of having to have chemo and steroids but the aml is largely control by other drugs. He continues to live my himself and drive. Hes had 2 holidays in the uk and has planned his holiday for next year already. Old age is starting to catch up with him a bit and he does now use a stick but apart from that hes doing ok.

Gosh, that's amazing, Mumof1! I think dad's will be trickier because the treatment options open to him ten years ago are ruled out because of his age. That said, he's been healthy and astonishingly active until now-he thinks nothing of driving four hour round trip in a day, although has accepted our offer of picking him and mum up for Christmas this year as he's getting very tired and breathless.

Saw dad today and if I hadn't known he had leukemia, I wouldn't have known fro
Looking at him. Very weird feeling, knowing it's all going on but him being just as normal to the onlooker. Especially because my mum still looked as frail and disabled as usual. I am worried that we will have to think about who cares for mum as much as dad because he is essentially her carer and I live a four hour round trip away and have three reasonably young children and a job.

I have a friend in a hospice with AML . It has gone really fast.

The treatment just made her really ill.

I would really advise spend the time you can now.

I had a friend die of cml 5 years ago I had a lot longer to get my head around it. Time to chat about everything .

I am so sorry you are going through this.

Thanks, Starlight, and sorry you are going through this. Yes, it is fast, isn't it? A few weeks ago, dad could drive back from Cornwall and now he can't do a 40 minute journey. I mean, he's pretty astonishing as an 85 year old anyway, but it is quick.

I obviously am saying this before he is really properly struggling, but I feel torn about treatment, which is a trial anyway and we don't know if he'll get on it, but I really want it to have a very good chance of working before he commits to anything that will make him very ill in itself.

That said, it's his choice and i want him around as long as possible. Even though he drives me mad...love him.

@ilovearticroll I am so sorry you are going through this. AML is an awful disease and seems even more brutal the older you are. I have literally just been through this with my mum. She was diagnosed and in hospital a few weeks and seemed almost well. So much so, I had several conversations with her doctors telling them they must have it wrong as she just wasn’t presenting as ill as they said she was. Don’t get me wrong she was unwell and weak but nowhere near as poorly as someone with weeks to live. They were very direct and honest with me and told me this is normal and when the deterioration starts it happens quickly. Sadly in mum’s case they were right and from the first sign of deterioration, she died within a week, it was so sad and so quick I still cannot believe it.

My mum wasn’t offered treatment as it is so gruelling and not very successful in elderly people. The treatment would have killed her and sh would have suffered in the meantime.

It was very recent so please feel free to message me if you have any questions on what to expect, or if you need to chat. It is a real shock and a lot to take in. Thinking of you as it is so difficult.

I'm so very sorry, shuttheblinds 😢. And huge condolences. It is unreal and very odd at the moment. Dad isn't in hospital yet, but I am fully aware that he may we'll be soon. I just don't know what kind of ill he will be, unless it's a more exaggerated version of the breathlessness he is having now.

We are all in limbo until he hears about the trial. But even then, I'm not sure how hopeful to be. It may just be that it's possible to keep him going longer but not well.

Just don't know. I obviously knew he was old, but he is astonishing and so if you'd asked me who would be left, it would definitely be him. My mum is frail and nearly blind, very shaky and as soon as we know what's what with dad, we will have to make sure they have care in place for mum. We are too far away and kids too young to be immediately carer for her, whatever happens in the medium to long term. I think concerns about this might be delaying me processing what's happening to dad. One of the strong things I keep thinking is that he won't get dementia or be long term incapacitated, which he'd hate. But that's Pre reality if leukemia really hitting. ☹️

My DF was diagnosed with this, 4 yrs ago when he was in his early seventies. He had one course of chemo (which he initially reacted very badly to, so they switched the meds) and then he went into remission.
The consultant gave us a poor prognosis, along the lines of 'if this treatment works he will be in remission for 12/18 months, then it will return and we treat again, we can probably only do this cycle 2 or 3 times max'.
But 4 years later he's still in remission and just having 6 monthly check ups. It's aged him quite a bit, and he's an old bugger, and it's getting increasingly less likely it'll be the cancer that carries him off.
So don't lose hope, it might not be as bad as it seems. You can just take each day at a time.
Good luck x

OP are you in Cornwall? My DF goes for regular oxygen therapy at the Merlin Centre and he finds it really really helpful with his general health & energy.

Ah, I'm so glad your dad is doing well. It's a bit more complicated for my dad because he's 85 and over 75, apparently people don't tolerate chemo or whatever it is they would have given him very well so they don't treat. I am generally an optimist, but have accepted that it is really bleak in terms of life expectancy for dad. In fact, although it's devastating in its way, as Ive said before, he would be very bad at being inactive and incapacitated so, hideous as it is, it might be for the best. However weird that seems. And naive, probably.

Yep I think Dad sneaked in just under the age limit. There was talk of a trial for him too, but he hasn't needed a second round yet.
I didn't know they won't even treat your Dad, that's rough. But the chemo nearly killed my Dad the very first time, so perhaps not surprising.
I don't think your point is weird. Dad is definitely changed since his cancer, he hates getting old and it has accelerated his grumpiness. He always said he thought he would die in a motorbike accident before he was 60, so he's definitely surprised he's still here. And goes sea swimming whenever he can (without telling us where) - I think he is keen to go out with a bang rather than a whimper IYSWIM! Definitely won't want to be incapacitated or dependent in any way and he would be absolute hell to care for.
So, I get it. But, my DM is in good health and she doesn't need care yet, so I am in a very different situation.

Really sorry op. I lost my dad after a 9 month illness last year. My advice would be to get a hospice referral if you can. The support they can give is invaluable in our experience, whether it be for pain management, respite or end of life care, or just general support for you all as a family.

It’s a heartbreaking time but I really hope you can find some special moments in amongst it all.

Thanks BonApp. I think after Thursday there will need to be a reality check. Dad is talking still about moving house. Like actually buying a new house and selling the current one. I have had to let him just talk for a bit, but theres just no way this can happen. I'm hoping to get him to talk to Macmillan or similar so they can help him be realistic but do it in a way I fear I can't.

And, BonApp, so sorry about your dad.

Morning, my DM (early 70’s, very active) had a shock AML diagnosis in summer 2014, she went into hospital for 3 months of gruelling chemo & by Christmas 2014 she was in remission & given 85% chance of remaining cancer free for 5 years.

Just before Christmas 2015 we found out AML had returned & she was given 6 months - she died May 2016 at 73.

Mum chose not to treat it & we made the most of the last months we had together.

Macmillan were absolutely amazing for all of us. I recommend you get in touch - they helped with equipment for the house etc. At the end we contacted a local ‘home’ hospice & they made it possible for her to die at home.

The end was very quick really & her major decline / bed bound only last a few days as the docs said it would. I am thankful for that.

My dad was the worlds worst procrastinator and there were loads of half-finished jobs around the house. He felt compelled to get them done whilst he was still (kind of) able to. It was stressful and heartwarming and funny all at once, but what could we do other than let him get on with it.

Macmillan weren’t great for us. Neither were the palliative care team. It was only after a horrible procedure when dad was admitted to the hospice for pain relief for a week or so about 2 months before he died, that he knew that’s where he wanted to be at the end. He felt cared for and reassured, and saw that they looked after us too, so that interim stay allowed him to understand how it works. Up until that point he’d been reluctant to consider hospice care...

Wishing your lovely strong dad all the best, and you too of course.

Thank you @ilovearcticroll it is so difficult and such a cruel disease. My mum didn't really need to be in hospital for the first few weeks, she just felt safer there and we were in the process of moving her somewhere. She was still on medication to control her wbc until they stopped working and they then withdrew it. Her 'blasts' were measured daily and the results normally indicate timescales and they were very accurate for my mum. They offered us hospice at home, a hospice, an end of life care home, or stay in hospital.

It was made even more difficult because mum didn't want to know any details. She knew she had AML but that was all she wanted to know and made it clear to all doctors that they should not discuss timescales etc. I know that she thought she had a lot longer to live and often spoke to me about maybe them finding some treatment for her etc. She did know it would become terminal but had no idea when and was so scared. A few things she said made me think she did have an idea but she was too upset to face it. The doctors told me, and that was a shock - when they first diagnosed her I asked them what I needed to do to care for her for the next few months and they made it clear it would be weeks not months as AML is so aggressive. Even in my mums last days she was telling me she thought she had a chest infection when actually she was actively dying, it was so sad and so hard. We had to sit doing her funeral plan and sorting her finances out with her at her hospital bed, it was an awful time.

The end came very quickly and she deteriorated very fast in the last week of her life. She died 4 1/2 weeks after diagnosis. Such a shock.

I agree that your dad probably won't be able to do the things he has planned, and he may realise that himself or with the help of Macmillan who will be open with him about prognosis. Don't lose hope though, maybe there is something they can treat him with to prolong things, there is for a lot of people so it may not be as aggressive for your dad - (it all depends on the mutation he has and his blast count).

Thinking of you and sending strength to you and your dad. Please get in touch if you have any questions.