My dad just died of AML

Hi,

I’m new here.

I don’t really know why I’m posting other than to get some thoughts and feelings out. It’s hard to talk to people in real life who know very little about leukemia / blood cancer / Acute myeloid leukaemia (AML).

I also feel that I don’t know much, despite what we have just been through, so I am interested to hear what people have to say.

My dad died this week. From Acute myeloid leukaemia (AML). Acute Myleoid Leukemia. He was 73.

Dad was diagnosed with Chronic lymphocytic leukaemia (CLL) in 2013, after a routine blood test. He was on “watch and wait” until 2017, around the time I had a baby, his first grandchild.

He was extremely aenemic and was on weekly blood transfusions, which was more than I had ever heard of.

Turned out, after a year of weekly blood transfusions, that he had a condition called red cell aplasia, where the body just stops making red blood cells. This was fixed by a pill. One pill just completely fixed it. If only he had had it sooner though, and saved him that gruelling year of weekly blood transfusions.

Around this time, he had to start treatment for the Chronic lymphocytic leukaemia (CLL). He was in a trial and he was allotted to use the standard treatment, FCR, I think it was called.

Turned out, he was highly allergic to Rituximab. He ended up in agony, treatment had to be stopped, and unfortunately the Rituximab badly damaged his bone marrow.

The details of this time are all quite hazy, it was all very much a rollercoaster. He had many hospital stays and was taken to hospital by ambulance at least twice due to sepsis.

He started Ibrutinib at some point, and this seemed to do well. He had some really good times over this period - holidays, buildings things for the grandkids (he had 3 by this point).

He also had thrombosinia (sp?) and something else, and a JAK2 mutation, although all that was a bit complex for me.

He also had bronchioestatis through all the coughing widening the vessels in his lungs.

Despite this, he was very active.

In July of this year, he stopped being able to eat. It was like a switch had been flipped, he just couldn’t eat. He didn’t feel sick, he wasn’t choking, he just couldn’t eat.

He was also feeling increasingly breathless.

I was in the process of moving house and he had big plans for renovations. He was frustrated he couldn’t physically do them, so was doing what he could from home etc, making plans but not physically carrying them out.

It was obvious there was something very wrong. But the hospital / GP etc were very slow in doing anything. Everything moved so slowly.

Eventually, the Chronic lymphocytic leukaemia (CLL) doctor broke the news that it was Acute myeloid leukaemia (AML), and very poor prognosis. This was October / November.

He needed a CT scan and the next day he was go start chemo, * azacitidine.

On taking him to this appointment, he had to use a wheelchair for the first time, which was upsetting for both of us although we didn’t really acknowledge it.

Consultant was shocked at the deterioration in him. However she also said that the CT scan showed issues around bile ducts and head of liver so he needed an MRI scan.

We were so shocked. He was so healthy apart from the Leukemia.

Anyway, he was so ill and dehydrated he was admitted as an inpatient. Had the MRI, ducts and liver etc looked fine. HUGE relief. However, it did show a thickening of the esophagus.

This was a worry, as obviously his issues was that he couldn’t eat. He was getting so thin. He was booked in for endoscopy.

There was a long wait for that, 3rd December, and he was in and out hospital in that time as we couldn’t get him to drink enough to be hydrated.

We were convinced it must be esophagus cancer.

Results came back a while later (dates are all so hazy). No cancer, but a virus, CMV, which is usually only found in transplant patients. Treatment was to be a drug called valganciclovir.

However, the day dad was in hospital and found out about this, he was also there for round 2 of chemo, and he passed out in waiting room. Everybody thought he’d gone. He had a raging infection (as well as the CMV infection) and was severely dehydrated. He did had a Do Not Resusitate in place, but he was brought back just by fluids and antibiotics.

This was a few weeks before Christmas, and that was the end for him, really.

When he came to, he was very confused, and he had a catheter in, for the first time. He just never really regained his independence after this.

He was in the hospital until he was discharged on Christmas Eve. I’m losing all track of time but he was maybe in there for a week and a half. Dad was a very chatty, sociable person. He was in a private room and he was very lonely, despite friends and family visiting. It was the nights he said were the worst. Just so long. Latterly, my mum took a camp bed and stayed with him, which he was so appreciate of.

He came home on Christmas eve and he died on the morning of 2nd January.

It was a very difficult week.

Nobody really gave us any guidance. We didn’t know he was being sent home to die. He had to make the decision himself that he couldn’t / wouldn’t go back to hospital for treatment.

Before he came home, he had a feeding tube inserted and we were trained on how to do that. Which all seemed very futile, but I guess without that he would have starved to death. And in the end we needed it to put fluids and crushed meds down as he just couldn’t drink.

The two questions that I have, and I wonder if anybody has any thoughts, are why couldn’t he eat or drink? This was from around July, getting progressively worse. No blockage or issue, just a complete loss of appetite.

Secondly, I don’t think we were ever told what the %blasts in his blood were.

I would like to know, even though I know it doesn’t matter now. Maybe I will ask the hospital.

I found a piece of paper in his handwriting yesterday, saying

BMB (bone marrow biopsy) 1: 90% blast infiltration
BMB 2: 50%
BMB 3 ?

It had haemoglobin and platelet figures etc as well.

But I don’t think these are his figures. Nobody told us that in hospital so don’t know where he would have got them. Also he only had 1 and a half rounds of chemo, I don’t think it would have done much.

I’ve just read a post on here from a lady whose mum lived 4 years on chemo for Acute myeloid leukaemia (AML).

I’m just wondering if dad was seen sooner, would he still be here

X

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Edited to add: We thought Acute myeloid leukaemia (AML) was his biggest hurdle, but apparently not.

He also had

Myeloprolific neoplasm

I’m seeing stories on here of people coping well on treatment for Acute myeloid leukaemia (AML), so maybe it was this other condition that was the problem?

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Oh @Foxriver8 I cannot imagine how you are feeling having lost your dad so recently.
You are very welcome to our forum.
I cannot thank you enough for posting so comprehensibly on our forum, you have obviously all been through so much.
This is a very personal response and certainly not a medical one.
I have found the family members are often forgotten and everyone asks how the patient is.
Then when someone is bereaved I have found often people do not know how to be around them.
Perhaps you just needed to post on here to get the diary of events for your dad down in black and white, perhaps you are looking for answers, perhaps you might get some answers from your dad’s medical team, perhaps there are are no answers.
Personally I know that we are very unique, but when you get older especially, complex beings.
I have multiple unconnected medical issues, it could be said my Chronic lymphocytic leukaemia (CLL) makes me more susceptible to some of them, who knows. I believe our medical teams look at us as holistic unique beings and treatment or not tailored to our needs.
It is also very difficult when your dad had capacity to make his own decisions on his own.
There is no right or wrong way of grieving and it is an ongoing process.
As you say perhaps you might consider writing down all your thoughts, feelings, questions and practicalities to ask your dad’s medical team. you can use this post for your thoughts.
Please do be very kind to yourself and look after yourself you must be so drained and exhausted, take your time and please do keep posting how you are getting on.

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Thank you for replying, Erica.

Yes, part of me thinks it might be useful to ask his doctors.

Partly I think there is no point.

He was a very strong man, and so fit and healthy in all other aspects, that I think the many blood diseases he had would have killed many people sooner.

He was googling about prognosis’s and medications and statistics right up until the end. He was desperate to live. That’s what makes it so difficult.

I am upset though that he was effectively sent home to die on Christmas Eve, but nobody told us. We had very little support at home. We were given some training on the feeding tube and sent on our way with with a box of medicines. No wheelchair, no hospital bed, nothing.

Emotionally it was very hard for dad. He kept swinging back and forwards between saying maybe the next round of chemo would start to make a difference, and then saying he wasn’t going back to hospital for treatment, it was too hard. He actually found the chemo itself ok, he was already feeling pretty low, but it didn’t make him feel any worse. But when he was having it as an out patient, travelling to the hospital each day for the appointment was too much for him.

He would also say he felt he was “getting stronger” now that he was being tube fed and finally getting calories in. He said he felt stronger and steadier on his feet. But I knew he wasn’t. His oral intake by now was nil, so all he was getting was the feed through the tube, which was not enough to put on weight. Sometimes, in the evening he would say “I’ve had enough of this. Unhook me so I can go to bed.” Originally the tube feeding was to be done overnight, with the idea that he ate normally during the day, to maximise calorie intake. But by this point he was taking in nothing during the day, so he switched to doing the feeding tube during the day, as if he had it on at night he would have to sleep sitting up, which wasn’t comfortable.

I just can’t believe he’s gone. He fought so hard for so many years, but when this Acute myeloid leukaemia (AML) (and whatever else) kicked in in the summer, it was just too much.

The last couple of weeks were particularly bad, and I do wish he could have been spared them.

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Oh @Foxriver8, my thoughts are with you, perhaps just give yourself time and be ever so kind to yourself.
We on our forum and The Blood Cancer UK support line on 0808 2080 888 are there for you please do use us xx

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Dear @Foxriver8
Thank you so much for posting and sharing. I’m so sorry to hear about your father and the very complex and challenging time he went through. It is understandable that you have many questions around his treatment and the complexities around his diagnosis. As it is all very recent for you it is no wonder you are reflecting on what happened and what could have helped your Dad more.
From your messages it is clear that you were an incredible support to him in the most difficult circumstances. I am so very sorry to hear that you didn’t get the support that you all needed. Perhaps at some point there will be some time and space for you to feed this back to the hospital team.
With your Dad having multiple diagnoses of Chronic lymphocytic leukaemia (CLL), Acute myeloid leukaemia (AML) and Myeloproliferative neoplasms (MPN), it would make his treatment extremely challenging but I would expect that is something that the Haematology team should have talked through with you all. A singular diagnosis of Acute myeloid leukaemia (AML) is very hard to treat but can be managed and even cured when there are no other complications including malignancies or significant medical conditions.
Your question about your Dad not being able to eat or drink is a tough one, sometimes the disease process leads people to lose their appetite or there is an underlying nausea. Was your Dad referred to any Gastroenterology teams to investigate this?
The other question you had was about blasts in the blood. If the blasts were present in the blood they would have been reported on the Blood Film which is often assessed when a Full Blood Count is taken and is abnormal. Sometimes the blasts are not obvious as the counts are very low and the Bone Marrow suppressed. I would suggest that would be a question for the Medical team when you are able. It appears that the 3rd Bone Marrow Biopsy results were not relayed too which could be discussed at some point with the team.
If you would like to talk this through with one of the Nurses, we are here for you and once again we send our sympathies to you and your family.
Take good care
Gemma
Blood cancer information and support by phone and email | Blood Cancer UK

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[quote=“Foxriver8, post:2, topic:12190”]
Myeloprolific neoplasm

Hi Gemma,

Thanks very much for getting back to me. It’s really good to speak to somebody who has a good knowledge of all this.

When his Chronic lymphocytic leukaemia (CLL) consultant said it was Acute myeloid leukaemia (AML), he said the prognosis was very poor. However we were never told what the % blasts were.

He had good from feeling pretty good in May, going on holiday etc, and seeing Chronic lymphocytic leukaemia (CLL) consultant every few months, to being very tired, breathless and unable to eat by July.

Things were slow moving in hospital but dad sent me a message one time when he saw a consultant when I was not there, basically saying that the Acute myeloid leukaemia (AML) wasn’t the worst, the Myeloproliferative neoplasms (MPN) was the real worry. Neither of us really knew much about this one.

We were never told the results of the bone marrow biopsies.

As regards the inability to eat, dad had a CT scan and then MRI which should a “thickening” of the esophagus. He then had an endoscopy. Endoscopy camera got down everything it needed to go with no obstructions or blockages, but there was an area which was described as being (if I recall correctly) “like velvet as opposed to silk”.

Biopsy was taken and we were fairly sure it would be esophagus cancer.

Result came back negative, which was great news, but positive for CMV, which the doctors said was incredibly rare and they didn’t even really know how to treat, but they decided to treat with valganciclovir.

Unfortunately the day we got the news that it wasn’t esophagus cancer, dad passed out in hospital waiting room. He was very dehydrated and had an infection (as well as the CMV).

He was admitted to hospital that day and he never really recovered, coming home on Christmas Eve and then dying on 2nd January.

Having read about CMV, it can be very severe. But dad had completely lost his appetite in July, leading to him being completely tube fed in December and he had faded away to nothing. I just don’t think it could have been CMV causing that because he had no organ damage, which I believe CMV would cause. I don’t think he had CMV way back in July.

Way back in the summer when Acute myeloid leukaemia (AML) was first diagnosed the Chronic lymphocytic leukaemia (CLL) consultant sent him for the CT scan because he was convinced there was something else going on because of the extreme weight loss, which he did not think was either Chronic lymphocytic leukaemia (CLL) or Acute myeloid leukaemia (AML).

I suspect he must have been right……but CT or MRI or endoscopic biopsy showed nothing? So what could it have been?

I even wondered if it could have been psychological and whilst dad was open to the idea, he didn’t think so, and I didn’t really either. I did ask for him to try Mirtazapine to stimulate appetite and also help with his mood (he was always very cheery and optimistic but obviously not by the end) but it made no difference.

Food also seemed to taste different to him, meaning he couldn’t eat it. I know this is common during chemo, but this was the case even before he started chemo / once he had stopped having it.

I’m just reeling a bit, to be honest.

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