10 Nov 2023
Forced to go to the GP by Mum: Joe’s CML story
Leukaemia UK funds research into more effective, kinder treatments for all types of leukaemia. And the Medcalf family have a special reason to be grateful for the work that is done into new treatments.
In 2023, Joe Medcalf was diagnosed with chronic myeloid leukaemia (CML). His mum Catherine worked in clinical trials for 11 years. She never thought that one day her own son would benefit so much from a new drug treatment. And she also played a crucial role in finally getting a diagnosis for him.
Joe was a super-fit 28-year-old who played football, cycled, went to the gym and swam, enjoying life to the full with no health problems. In fact the last time he had registered with a doctor, let alone gone to see one, was when he was at university.
But during Christmas 2022, something changed. Joe spent the festive season with his family in Wiltshire. He arrived with a cold and felt exhausted, with very little appetite. The rest of the family picked up a mild version of the virus too, however everyone else carried on as normal, cycling and going out for long walks in the country. Joe however was totally wiped out. The rest of the family recovered quickly. Joe’s symptoms lingered for weeks. That is, until Catherine intervened…
“In retrospect that was the first big sign that my immune system was compromised,” says Joe, who lives in Southwest London and works for a life sciences company. “I was absolutely wiped out. I was with my parents and family over Christmas, and friends over the New Year, and everyone caught it. But they got over it in days. Mine dragged on for weeks and I felt very ill.”
But Joe eventually recovered and carried on with his busy life. Except he was still very tired. And then he started to get unexplained bruises.
“If I played football I would be completed knocked out for around 12 to 24 hours afterwards,” said Joe. “It was like having really bad flu. In fact I actually rang my boss a couple of times to say I had flu and I wouldn’t be coming in the next day. But then I would wake up the next morning and feel completely better. The months leading up to my diagnosis I also noticed I had many unexplained bruises which weren’t going away.”
In February 2023, Joe’s Mum intervened and insisted he register with a GP and make an appointment.
“It’s the classic male thing – forced to go by my Mum!” said Joe. “I genuinely would not have gone without her. She kept on at me to make an appointment, she knew I wasn’t myself. My brother was living with me in my house at the time but was travelling a lot for work, so we didn’t see much of each other. So I was on my own a lot. But I saw Mum every couple of weeks, and she noticed a real change in me, especially with the bruising.
“I finally registered and managed to get an appointment with a new GP and told her about the exhaustion, bruising and night sweats. She sent me off for a blood test at the local walk-in centre. I got a call from the GP herself three or four hours afterwards. I knew something was going on because I could hear it in her voice. She told me to go straight to A&E for more blood tests. She said make sure you bring someone with you. I said really? My brother was away at the time travelling for work, but Mum drove straight up from Wiltshire immediately after I called her to be with me. We received the results from a very young junior Doctor in a corridor in A&E that there something was seriously wrong with me, as my white blood cell count was extremely high. He indicated that the results showed a problem with my blood and were pointing to leukaemia. He allowed me to go home to pack a bag on the understanding that I return to St Georges Hospital in Tooting to meet with the haematology team first thing in the morning.
“I feel was very lucky with my GP who listened to me and acted immediately, she could see that something wasn’t right and sent me for a blood test. Even my hospital consultant was surprised that my GP sent me for the test straight away. It was the biggest stroke of luck that I’ve been fortunate to have, which I know others haven’t. Leukaemia is difficult to spot as it can present itself as many illnesses, so consequently there can be a delay in diagnosis.’’
On Tuesday 21st February 2023 Joe was told he had CML.
Joe spent two weeks in hospital having multiple tests for the impact the high viscosity in his blood had had on his body. He had a bone marrow biopsy, the results of which confirmed the type of leukaemia Joe has. Doctors also discovered he had haematomas or mini blood clots in his legs, and tiny haemorrhages in his eyes. Fortunately there was no lasting damage. He was also immediately put on the drug Hydroxycarbamide which brought his white blood cell count down. Within days he began to feel significantly better.
“Once my levels were down to a reasonable place the team monitored me for a few more days, then I was finally allowed home to rest,” said Joe. “I was then put on a Tyrosine Kinase Inhibitor called Dasatinib. I returned to hospital twice a week for several weeks so that my consultant and her team could monitor me closely. TKI drugs basically attack the protein that causes my CML. I will be on it forever. I do feel very lucky as a few years ago they didn’t have this drug so my outcome would have been very different. I am so grateful for clinical trials and all the work and research that goes into licensing new drugs.
“Mum was with me during my two weeks in Hospital. She, ironically, has a background in pharmacy clinical trials,” said Joe. “She was familiar with the treatments I was receiving, and the haematology team reassured me that CML is treatable with TKI’s, and they were very effective in treating my type of cancer.”
After six weeks resting at home, Joe returned to work and is now carrying on enjoying sports and life in general.
“I’m feeling very good,” said Joe. “Infact I never felt unwell, although in hindsight I was very very ill. The leukaemia sort of crept up on me slowly and because I was young and very active my body was just compensating, I think’.
“Mentally, I have to say leukaemia has caused me very little anxiety to date. I think this is because I previously experienced a very bad period of mental health when I was away at university, and the leukaemia has been easier to deal with than the vicious cycle of anxiety and depression. I’ve been massively surprised by how well I’ve dealt with it.
“Getting back to work as soon as possible was so important to me. I just wanted to get back to normal, I have a busy job and it’s the most important thing alongside family and friends. Leukaemia hasn’t changed that.”
Learn about the signs and symptoms of leukaemia.
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