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