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Myelodysplastic syndrome transformation to acute myeloid leukaemia

(43 Posts)
Kernowgal Tue 02-Jan-18 18:22:45

Thought I'd post this here in case it was of use to anyone in the future. Not looking for replies, more a place to write our journey and experiences and for anyone else who's been through this, either themselves or a close relative, so anyone facing it might have an idea of what to expect.

Caveat: this is my mum's story and it doesn't end well, but her prognosis was never good from the start.

Back in 2009-10 mum started feeling increasingly tired but put it down to getting older. On holiday in 2010 she collapsed and went to the doctor when she got back. She was initially diagnosed with pernicious anaemia, then aplastic anaemia, and treated with regular blood transfusions and B12 injections alongside iron chelation tablets to remove excess iron in her blood. Weirdly, the iron tablets seemed to trigger something and she was declared to be on the mend for a good few years. She was still having bone marrow biopsies every six months, but all was clear. At some point the doctors decided it was myelodysplastic syndrome, and she was warned that it had the potential to transform into acute myeloid leukaemia (AML).

In 2016 and 2017 she generally lacked energy and complained of feeling tired and low, and in October 2017 her consultant ordered a bone marrow biopsy. Lo and behold, they discovered she'd now got AML and so she was given the option of palliative chemo or full-on chemo with the aim of a cure. Eventually she decided to go for the full-on chemo, but just a day later she complained of feeling unwell and dad took her to A&E. They found she had an infection and admitted her immediately.

She stayed on the acute ward there for a week and was then transferred directly to the main hospital to begin chemo (a combo of cytaribine and daunorubicin given over four cycles) with a stem cell transplant if all went well. Except the damn infection took weeks to treat, using all the broad-spectrum antibiotics they could throw at it. A doctor later said it had been a pretty bad case of pneumonia, although nobody told us that at the time. Since then she's had infection after infection, some of them making her really really ill. She ended up with a viral infection around her mouth, and this has been very painful for her, making eating very difficult, and so she's lost a lot of weight.

At this point her consultant said it was unlikely that they would offer chemo, because it was more likely to kill her, and they'd review it in a week or so (this was just before Christmas). Of course we then got the dreaded phone call a week later saying they couldn't do anything more for mum, and she'd be brought home or to a hospice to have palliative care until she passed away.

Unfortunately because of the Christmas period there have been quite a few delays, but hopefully she will be home later this week or early next. Ironically her mouth is now healing and she's eating well, but it's too late. So we have met with the palliative care nurses and occupational health team today to discuss equipment at home and care provision etc. We also have the option of a hospice if we or mum can't cope with having her at home until the end, but we are all keen that she comes home for a few days at least, plus the hospice is a fair drive away. She's now been in hospital since the start of December and she's climbing the walls, bless her.

I'll update this as we go, but if you find this thread in the future, having found yourself in the same position, please don't hesitate to message me and I'll see if I can offer any advice.

Kernowgal Tue 02-Jan-18 18:24:20

I should add: we think mum's MDS/AML probably comes from her parents being heavy smokers throughout her childhood, although neither of her siblings have developed it. She also worked with benzene in her 20s, which is another possible cause.

nothingtodotoday Tue 02-Jan-18 18:34:03

My dad suffered with exactly this. He had chemo though for over a year every 4 weeks and kept the AML away for a longish time.

He tried palliate care near the end but did not like it so we took him home. He died at home in a room equipped with a hospital bed etc.

He had morphine at home for the district nursed to administer but it was on on call doctor who cam out the night we needed it. He died later that night in his own home.

All the best. x

Fekko Tue 02-Jan-18 18:37:14

Yup been there. I hope she gets home soon - it will be calmer for her.

Our doctors told us that it was down to 'bad luck' and no particular cause.

Kernowgal Wed 03-Jan-18 10:03:40

Thanks both, and sorry you have been there too.

We're getting the hospital bed delivered tomorrow or Friday (which was a relief, as I was worried about how she'd cope in a normal bed). Then it's just a case of social services finding carers with availability. Once that's sorted, mum should be home pretty quickly.

She's had enough of it all now, she's even said she wants the end to come quickly because she feels so rubbish. Which was quite hard to hear, but I totally understand.

nothingtodotoday Wed 03-Jan-18 21:09:53

I totally understand that. My dad was in denial but when he had had enough I could just tell that he wanted it to end.

Just be there for her, and take all the care that is offered. The Marie Curie nurses are amazing when they stay overnight.

Summer1986 Wed 03-Jan-18 21:22:57

I'm sorry to hear you and your family are going through this.
I lost my Mom to AML in April 15 after she was diagnosed in Sept 14. She had 2 cycles of chemo and went into remission but relapsed before her planned stem cell transplant. She had a further cycle but passed away 5 weeks later.

Kernowgal Thu 18-Jan-18 23:04:02

nothing and Summer I'm sorry you've been through this too.

Quick update: mum came home on Tuesday. She's so relieved to be back, but on the other hand she knows she hasn't got long left now.

That said, she's spending daytimes with us, eating well (same food as us - her mouth has healed completely, which is wonderful) and then heads to bed at 9pm once the carers have been.

We're getting four visits a day, which seems a bit much but the carers are all lovely and I think mum prefers having strangers help her with personal care rather than worrying about burdening us.

The palliative care nurse specialist visited today and asked us if anyone had spoken to us about timescales. We'd had a doctor a few weeks back who said that two to three weeks after last bloods/platelets was the norm, although it varies, and the PCNS said that sounded about right. She also warned that mum will take a turn for the worse after a few days - not sudden, but we'd see a marked difference over a couple of days. So who knows how the next few days will go. Onwards and ... Well, onwards I suppose.

Kernowgal Thu 18-Jan-18 23:09:40

I should add: the nurses, doctors and auxiliary care staff at Southampton General have been absolutely wonderful. They couldn't do enough for mum.

iVampire Sat 20-Jan-18 07:33:26

flowers

grannycab Fri 26-Jan-18 18:59:56

Glad to hear everything is going okay at home, the carers we had were fantastic.

Hope you are all coping. x x

Kernowgal Fri 26-Jan-18 20:49:12

Thank you! I've come home for a break - needed some headspace from it all. The carers are great and are a much-needed dose of cheerfulness.

Mum is pretty stable at the moment - she gets a bit confused from time to time but she's spending her days sitting up with us, with a mid-afternoon snooze on most days, but is mobile, eating well and seems quite normal, in a way. I've not really noticed any deterioration, though that worries me in case she suddenly takes a massive downturn.

I have to say, though, the discharge from hospital has been a farce. We were given a huge bag of meds by the hospital and then pretty much left to it. I've had to request new prescriptions from her GP (who didn't even know she'd been discharged) and getting the receptionists to put the prescription requests through has been a right fucking battle. I got told today "that's not a repeat, that's acute!" - well I don't fucking know, I'm not a medical professional and we've been left to sort this out on our own. Requests have been lost or not fulfilled and I had to get my best polite rant on this morning at the GP's to get the prescription put through.

The discharge notes were sent to the wrong GP (and he retired several years ago). Her notes at the GPs said she was discharged in November - no, that's when she was admitted.

Thank god the carers were sorted before she was discharged, otherwise I dread to think what situation we'd have found ourselves in. To be fair, the GP engaged the district nurses as soon as she heard mum was back, but it's like there's a total disconnect between hospital and community care. Mum seemed to slip through the cracks, which is the last thing you need when you've got weeks to live. Ho hum.

grannycab Fri 26-Jan-18 22:27:33

We had a few hitches on discharge too. Notes got left behind and i had to beg for phone numbers for a day or two! My dad went downhill quite quickly towards the end, but got slowly less mobile and stopped eating.

We had nighttime Marie Curie nurses and they were amazing, They stay awake so you can sleep without worrying. If you are offered this please say yes...if not, maybe enquire?

Just enjoy every minute, we looked at photographs from the past and asked more information about them!

Take care of yourself too.

Kernowgal Sat 27-Jan-18 22:51:40

Thank you smile We spent a lovely day looking at photos, I must dig some more out next week. Did your dad have AML too? What a horrible disease it is.

The palliative team mentioned Marie Curie nurses so we'll definitely go for that if it's an option. I'm just not really sure what to expect over the next few weeks, it's all a bit of an unknown.

I'm having a good break and catching up with friends. It all seems rather surreal.

grannycab Sun 28-Jan-18 20:41:38

Hi, yes my dad had the same as your mum. He had MDS for about a year before it transitioned to AML. It really is horrid.

My dad just got more tired and did less and less, couldn't get out of bed etc but could still chat when awake. Basically he just got weaker and weaker gradually, then went downhill a bi more quickly near the end.

My advice - Take all the help you are offered as it got harder when my dad stopped eating and drinking. They will offer morphine for your mum. The district nurses were great as were the Macmillan helpers who used to bath and shave him. Marie Curie were so good - they stay awake so you can sleep and not worry about anything being needed at night.

Well done having a break and a catch up with friends, keep doing that. Look after yourself too.

Aby questions just ask - pm if you want.

Kernowgal Sun 28-Jan-18 21:47:16

Thanks smile

My brother said mum had been a bit more tired today, so I am wondering if this is the start of the decline. We have morphine ready to go if required, although the doc at the hospital said she didn't think mum would be in much pain at the end, which was nice to hear. Our GP is making regular visits to the house, which is a relief as it's a fight to get past the receptionists and it's really dull having to explain the situation each time.

I've got quite a bit of work to do this week, which is a nice distraction when mum's not up and about. I suppose we just wait and see and make the most of the time she's awake.

I'm very grateful to have Mumsnet to sound off on - sadly it sounds like quite a few people on here have experience of relatives with AML. Did your dad have chemo and/or a stem cell transplant? On reading mum's discharge notes it turns out she had sepsis caused by the pneumonia - no wonder they said chemo wasn't an option.

grannycab Mon 29-Jan-18 17:45:26

Hi

My dad had chemo for about a year, he was over 80 so too old for stem cell. Considering his age he fought on for a good year before AML stepped in.

He only had morphine in the last 2 days, the on call doctor came out and was lovely as he refused to take it from us!

I recommend just keep reliving the memories and photos and ask anything you want to know in her/your history too.

x

Kernowgal Fri 09-Feb-18 22:23:09

Pleased to say that mum's still with us at the moment, eating well and seeming relatively stable. She's having some trouble with constipation and memory/recall but is otherwise ok. Not bedbound either, still using her frame to potter around the house.

Am expecting a sudden deterioration to be honest, but glad to have some extra time with her.

grannycab Sat 10-Feb-18 07:38:15

That is fantastic news, enjoy spending time with her. Make sure you get time for yourself too. x

Kernowgal Wed 28-Feb-18 22:17:31

Well, here we are at the end of February and mum's still going strong! She has good days and bad days but we're still not seeing much evidence of a decline. She still enjoys eating and doing the family history etc; I'm doing regular trips up there but am pretty exhausted by it all. I could really do with a proper break but am scared to go abroad even for a few days in case I get the dreaded phone call.

One of her carers said that another chap they care for had been given two weeks to live and was still doing well six months later...! That would be great, but the feeling of limbo is very stressful.

AuntieStella Wed 28-Feb-18 22:25:15

flowers

Not knowing is very hard.

But perhaps go for your little break soon? As you say there's no sign of decline, then better now/soon than waiting?

grannycab Thu 01-Mar-18 19:25:29

That's great that you are still able to spend time together and if the is eating and drinking I would say maybe try a night away, although not too far. You can't put your life on hold.I would go now rather than later.

She wouldn't want you exhausted and you will love hearing about your wee break.

Kernowgal Thu 01-Mar-18 20:03:26

Thanks both.

I've had a couple of days off due to the snow and it's been really nice to just do nothing at all. Feel like I've caught up with myself a bit. I was supposed to travel up this weekend but the weather has put paid to that. Quite tempted to book myself a night away this weekend as I don't have any other plans. In fact yes, that's what I shall do. Will see what I can find relatively locally.

The not knowing is awful. I need a crystal ball! I want her around for as long as possible but I can't make any plans.

grannycab Mon 19-Mar-18 20:15:50

Hi, Hope all is well and you are managing to spend some more time with your mum. You will know when it is near to the end. Just be there for her.

Kernowgal Wed 23-May-18 15:47:11

Quick update c&p from another thread.

I'm back up with my mum, she's deteriorated a lot over the past couple of days. After a very bad night we had the district nurse in today to do a syringe driver with anti-sickness and anti-anxiety drugs to help her feel better, and she's definitely much more peaceful and at ease, which has helped all of us feel less anxious.

Just a matter of days now.

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