Acute Promyelocytic Leukaemia - Sudden Onset Of Symptoms, Diagnosis And Hospitalisation

I was diagnosed with Acute Promyelocytic Leukaemia (APL) in mid April 2022, having been advised to immediately go to A&E by my local pharmacist at about 9.30am about my badly swollen wrist.  That morning my wrist, already doubled in size, had become crimson red past my elbow, where it appeared deformed; and had shot up into my hand up to the second digits of my fingers, although the pain that was previously there was subsiding.  This bleeding had happened in the previous twelve hours, and it became apparent it was ongoing.

Before my diagnosis, for about two weeks I had had other symptoms.  These included a bruise in my left chest / shoulder that came and went; plus each of a cut, nosebleed and swelling that didn’t stop bleeding easily.  After these four incidents, I considered that it might be leukaemia and looked up leukaemia symptoms; but didn’t have any infections nor did I feel tired, nor have any night sweats, so I thought the possibility unlikely, especially as I had no more incidents of this nature and felt generally well.

A week before diagnosis, my wrist started swelling very badly; its cause was then a mystery.  I also had a couple of aches and pains that came and went.  A few days before diagnosis, my urine turned red; upon having haematuria (blood in urine) confirmed at a local emergency health centre, I immediately got in touch with my GP as advised, I was due to talk to him in two days’ time.  But things moved even faster: the next day I went to A&E about my wrist as above; something apparently unrelated.  Although I was wondering why I had all of these ailments coming all at once.

In A&E, where I arrived that morning at 10.30, I had many blood tests, many other health tests including the now familiar observations (temperature, blood pressure, heart rate, oxygen levels), was asked many questions, and had a chest X-ray.  Even before the chest X-ray, having been to A&E about 18 months previously, it was obvious to me that I was being tested for and asked about much more than “the usual” things.  Most of it seemed to me to have nothing whatsoever to do with a swollen wrist.  It was at about 12.30, when I was informed the iron level in my blood was low (nearly requiring a transfusion), which I knew to be a symptom of many cancers, that I started to be alarmed, although I felt fine.  Shortly afterwards, about 1pm, I was escorted to the nearby AAU unit where I waited for updates and possible diagnosis and medical care.  My escort was a big bloke who looked like he spent a lot of time in the gym, on reflection quite possibly chosen to pick me up off the floor in case I passed out.

Periodically throughout the morning, I was asked by my employer and family, who I’d already told I was on my way to A&E and “why”; what was going on, what was it?  I told them I didn’t know, I’d had lots of tests, and the doctors were going to get back to me shortly, and I’d let them know as soon as I knew.  My texts, emails, teams conversations, whatsapp messages etc. in the run up to admission and diagnosis are pretty chilling.  In AAU I also heard one guy grumbling to the effect of “why have I been sent here, it’s only something little”; and his companion was trying to calm him down and explain that it might not be so insignificant.  As things turned out, I was very much a case in point regarding the latter scenario.   At about 3pm, I was called up, referred to by name by a nurse who offered me a sandwich.  I thought “well, at least I don’t need an operation, whatever it is”.  In the fog of the situation, I eventually didn’t eat it.

The next person who spoke to me (about 3.30pm) was a haematologist, who was accompanied by his assistant (when he introduced himself as a haematologist, that made my eyebrows perk up); and he told me that it was almost certainly APL based on blood tests and microscopy; they were waiting for PCR confirmation, which takes about 5 days.  I didn’t know they did microscopy at the A&E/AAU level; that alone made me think “wow” in a reassuring way.  Initial treatment is the same, namely ATRA, regardless of whether PCR in due course determines your condition to be the commonest APL with the PML-RARA gene translocation (mine is this case), a rarer APL with different gene rearrangements, or not APL; my first dose of ATRA was in the AAU unit.  Plus blood products and other medications if, as and when needed.  I knew that leukaemias could be classified as acute and chronic for each of myeloid and lymphoblastic, but little more (APL is a type of acute myeloid); except much progress has been made regarding treatment and many leukaemias are no longer the death sentence they were early on in my life, not at all.  APL is an excellent example of this about turn in the likely fortunes of its afflicted.

The haematologist didn’t beat about the bush; he immediately told me that regarding survival the next few days were critical, but after that the outlook was very good; and I was to be admitted to the specialist haematology ward in another nearby hospital as soon as a bed was available; diagnosis of APL is near as damn it a medical emergency as it is an exceptionally aggressive cancer.  My parents arrived as soon as possible after I and the haematologist broke the news and explained the situation to them about 4.50pm; bringing an emergency bag for hospital visits that I had prepared a while back.  I was also assessed by another medical team, reconstructions I think, as to whether I should have my swollen arm drained (this eventually didn’t need to be done).  At 7pm I was informed a room was available; soon afterwards an ambulance arrived to take me the short distance to haematology, all the time under constant observation.  The blue light went on, the two ambulancemen talked to me a lot, and asked me if I felt ok and if I could walk to my room; they had been informed of my illness and had genuine realistic concern that I might collapse.  I later on found out that there were intensive care units right next to the ward, reassuring and not surprising on reflection, like much that I was to discover.

When I arrived at my hospital room, whilst changing into my hospital gown, I looked at myself in the mirror; and now had big crimson bruises down my ribs and smaller crimson bruises on my legs and back; which weren’t there in the morning.  The “normal coloured” but big bruise on my left shoulder/chest had returned with a vengeance; and by now the crimson bruise on my swollen arm had gone up into the bicep.  Within ¾ hour, I was hooked up to a drip to receive the first of many blood products.  I can’t remember if it was platelets, plasma, or cryoprecipitate, definitely not a red cell transfusion: my first one of those was to occur in a few days’ time.  I had four infusions that evening just before a very welcome midnight feast of bangers and mash, although I didn’t feel particularly hungry.  Throughout all this, I felt fine and was calm.