In February 2016, at 54 years old, Karl began to feel extremely tired and breathless, and as if he had a lot less energy than his 80 year old neighbour. After also developing a continuous cough that was driving his wife mad, he took a visit to the GP for a blood test and was later diagnosed with acute myeloid leukaemia (AML). Karl shares his Spot Leukaemia story here…
“I was a blood donor, and I went to give blood as usual, however in December 2015 I was told I couldn’t give blood and that I should see my doctor. I asked them why, but they just gave me a .99 on a leaflet and told me to take it to my doctor. I didn’t know what it meant, and I didn’t go, like a lot of men don’t.
I developed a cough just after Christmas, and I was getting really tired. My 80-year-old neighbour was skipping down the stair, and here’s me gasping for breath. That’s when I realised something wasn’t right. I was at work one morning – I had only been there three and a half hours, but I was really tired and breathless. I was struggling so much that I asked to have the Friday off and I went to talk to my doctor.
I explained that the blood donors had said that I needed to contact my doctor. After the appointment, that afternoon the doctors rang back to ask if I was alright. My answer was, “Why shouldn’t I be?” in which they responded, “We found something in your blood, so we want to examine you.”
I went along and he felt under my arms and did the usual checks, but said he wanted to do a bone marrow biopsy to rule out leukaemia. I had that done on the Monday, and I rang for my results on the Friday. They told me they had enough information for my diagnosis and asked whether I wanted to see them now or wait. I phoned my wife, and we went down that day and found out I had acute myeloid leukaemia (AML), which was a bit of a bombshell. The following Monday I was admitted to hospital.
I knew a little bit about leukaemia because my dad had a chronic form of leukaemia but dies of something unrelated. I wish I had gone a bit sooner but fortunately; I still went early enough before it took a real hold. There’s still a real reluctance to go to the GP in the UK – especially for men. I googled and all the symptoms fitted anaemia. I didn’t think to look for anything on leukaemia, but then I didn’t know the symptoms anyway. There are quite a lot of crossovers between anaemia symptoms and leukaemia symptoms.
I asked what my chances were, and I was told that with treatment there was still a four per cent chance of death, but without treatment, it was 100 hundred per cent. That really hit home for me.
Things moved quickly, from not being able to give blood in late December of 2015 and my eventual diagnosis in February 2016. The sudden out-of-the-blue diagnosis meant I didn’t really have a chance to hit the ground from that initial consultation.
Those early days are a whirlwind; suddenly you’re an inpatient and chemotherapy starts. You’re trying to rack your own head around this sudden diagnosis as well as tell your family and friends. The doctor told me to go and have some beers at home this weekend and come back Monday – we’ll do a PICC line and then we’ll start chemotherapy on Tuesday.
To be honest, at that time cancer was something that happened to other people. I never looked into what the treatment was. I just knew that chemotherapy was what cancer patients had, so I wasn’t worried about it at first. I’ve been bald a while anyway, so I wasn’t worried about losing my hair.
The first lot of chemotherapy hardly had any effect on me – my consultant called me the man of steel. However, the main effects of the chemotherapy were nausea and appetite. I sailed through the first two lots, but the third lot hit me harder with the sickness. My sense of smell was lost, my eyelashes fell out and I didn’t have to shave for weeks. It became apparent that regular chemotherapy wasn’t enough for me, and I would need an immediate stem cell transplant as my genetics were complicated. He asked if I had siblings – I have seven, so he tested all of my siblings and we got five matches. We were expecting one or two, but he got five! My sister who is two years older was a 10/10 match for the antigens.
I had my last lot of chemotherapy at Rotherham hospital, and they increased the dose massively to be ready to go for the transplant. I would then have to do five days conditioning (which is another dose of chemotherapy) and some other things to basically wipe out my immune system. The transplant took about 15 minutes, and they just did it by putting it straight into my Hickman line in July 2016.
However, I experienced graft-versus-host-disease (GvHD) straight away; my cells were trying to take back over from my sister’s cells. I had ulcers in my mouth, itchy skin which was also purple. They were basically like big purple and yellow patches, but lots and lots of them.
I needed to have four cell top-ups and I underwent photopheresis, which is a process that stimulates an immune response in my body to fight the development of progression of the GvHD.
I am thankful that an early diagnosis and the research involved and the skills of the haematology team in both Rotherham and Sheffield made this possible and saved my life. If it was 15 years earlier, it wouldn’t have been possible to treat someone of my age. Now six years later I am still in full remission.”
Karl’s symptoms of leukaemia were: • Fatigue
Are you currently dealing with similar symptoms to Karl’s? If so, contact your GP and ask for a blood test.
Early diagnosis saves lives.