Scott was diagnosed with acute lymphoblastic leukaemia after collapsing at a work event. Now, after a treatment journey which included chemotherapy and ground-breaking CAR-T stem cell treatment, he is celebrating his remission by indulging his rediscovered passion for cycling. Here, he shares his story

Road to diagnosis

During the autumn of 2015, I began to feel constantly tired and generally unwell. My aversion to all things medical meant it was many weeks before I found myself in the waiting room of my local GP surgery, but eventually I made an appointment.

I explained my symptoms, which included tiredness, lethargy, weight loss and some heavy night sweats.

My GP prescribed antibiotics and told to come back the next day for a blood test. I think he assumed the swollen glands in my throat were a simple tonsillitis issue that the tablets would sort.

I explained my symptoms, which included tiredness, lethargy, weight loss and some heavy night sweats

Afterwards, I returned to work as a self-employed road safety trainer and driving instructor. It would take more than a bit of illness to stop me working, and I guess I got used to feeling a bit rough.

I went back to the surgery for a follow-up appointment after my initial blood test. Ironically, I was feeling quite a bit better and the blood tests didn’t give my GP any cause for concern. I resumed my working life.

But during the Christmas break, my symptoms returned with a vengeance and I spent much of it in bed.

I went back to my GP three more times, and was always told it was nothing more than a virus that a different antibiotic would probably get to the bottom of.

My acute lymphoblastic leukaemia diagnosis

In spring 2016, I was doing a presentation in a plush hotel in my role as a road safety trainer. I don’t remember passing out in front of 25 delegates, but I’m assured I did. Thankfully, that was the catalyst that meant we finally got to the bottom of my symptoms.

I found myself in The Queens Medical Centre that evening, being kept in for observation and given IV fluid.

The next day, I was sent home with the promise of a follow-up phone call when the blood test results had been collated.

Later that afternoon, I was contacted by Nottingham City Hospital’s haematology department and given an appointment for the following day.

I remember very clearly looking at the white plastic wall clock behind the head of the consultant. It read 3pm. Next time I glanced up it read 3.10pm. In that brief passage of time, my world had turned upside down. All of life’s certainties and concerns had gone and been replaced with the news that I had been diagnosed with acute lymphoblastic leukaemia.

It is a strange experience receiving that sort of news, along with the percentage chance of making it through the treatment.

I spent the next day putting my work affairs in order, making all the necessary phone calls and sending messages far and wide. “Scott Davies is no longer able to work with you on your journey to your driving licence.” I had to let my employer know they would need to find another classroom trainer for upcoming courses.

When that was done, I sat back in my reassuringly comfortable armchair, and considered what the future may hold.

I can honestly say at no point did I think things might not work out. As far as I was concerned, I had no doubt I was in the 50% that would get through successfully. The will to survive is a strong motivator.

As the treatment gathered pace, my day-to-day life comprised of hospital visits which became extended stays as the chemotherapy, radiotherapy and finally bone marrow transplant experience kicked in. After all this, I was given the welcome news I was in remission upon my release, five months later.

Remission

All went well for the next 18 months. I had become reacquainted with cycling, after a hiatus of 30 years, during my hospital stays via a book by Lance Armstrong called “It’s not about the bike”. It charts his rise through professional cycling and his battle against cancer and recovery. It was such an inspiring read.

I spent much of the summer and autumn of 2017 riding around my local area and much further afield. Life was slowly starting to turn and things were improving. Being a forty-something man dressed in unforgiving Lycra is never a good look, but I loved cycling very much.

One bright winter day I was riding out in the Peak District. I had just spent the best morning climbing on my bike into the highest hills, up the pitch of a mountain, up where the green leaves quiver in the cold sun.

Relapse

I got a call from the haematology department to say I needed to go in for another biopsy, as the results of my last one had come back inconclusive. I later realised what that actually meant was I had tested positive and my remission journey was at an end.

The consultant was in tears. Two weeks later when the results were back, she explained that relapse meant my options were very limited. In fact, I had two.

The first was conventional relapse treatment – a month of continuous chemotherapy with the hope of getting me into remission for a statistically short but unknown period.

The second would involve the trial of a new therapy that had evolved in USA and was being pioneered in the UK by a team of specialists at UCLH in London, led by Dr Martin Pule.

Dr Pule has spent the past 10 years engineering CAR T-cells in the lab where they’ve overwhelmed cancer cells — both leukaemias and some solid tumours — in an incubator.

His work had reached the stage where it needed to be tested on real patients. I signed up for the trial – I would be the ninth UK patient to take part and the first from my local Nottingham health trust.

My consultant thought without a doubt that the trial was my best chance. I trusted her implicitly as the team in Nottingham had done a sterling job up to this point.

A week later, my wife and I were boarding the 8.05 train to St Pancras to meet the team and see what this brave new world would entail.

My CAR T-cell treatment

The CAR (Chimeric antigen receptors) T-cell therapy involved taking T-cells from my original bone marrow transplant donor. They were re-engineered in a lab, so they would recognise and kill the specific CD19 leukaemia cells when they were put back into my blood.

Dr Roddie, the trial consultant, explained it was like having an army of good cells hunting out and killing the bad ones, effectively a war in my blood. The trial would monitor my body carefully and how it reacted to the cells.

Now, the trick was to keep me alive with standard therapy until the cells were able to be produced, which in my case wasn’t until the end of July – some five months away.

I returned to Nottingham with hope and optimism for the future.

It was like having an army of good cells hunting out and killing the bad ones, effectively a war in my blood

As the spring and summer of 2018 progressed, I was in the day-to-day care of Nottingham City Hospital. The treatment was intense, with daily chemotherapy, both IV and oral, combined with stays in hospital, although I was mostly responding in a positive way and was allowed home some weekends.

When I did get home, I got on my bike as often as I could. In fact, I was able to take part in and complete my first organised ride, The Great Nottinghamshire Bike Ride. I cycled the 50-mile route despite having had a good dose of chemotherapy two days before.

Shortly afterwards, I got a call from UCLH to say 31 July had been set as the date for me to receive the cells.

I was due to go to London 10 days before that, for prepping and conditioning with a dazzling cocktail of drugs to get me ready for action. My trial journey had begun.

Arriving at UCLH was not daunting, as I’d met the team and staff who would be working with me. My room, where I would be staying for at least the next three weeks, had a familiar feel too.

Eight floors up, with commanding views across central London, I could see iconic sights that hoards of tourists flock to the capital each year to see. The BT tower was most visible, literally outside my window.

As my start date approached, a normal routine began to emerge. I had an exercise plan to work through. My goal was to ride my static bike three times a day, covering around 30 miles, although that wasn’t always achieved. I picked up a virus so was kept on my own until it had cleared, but did lots of sit-ups and wall press-ups during that time, too.

To keep me motivated, I set up a quotes wall in my room, which I and various doctors and staff members added to as the weeks went on. One of my favourite quotes was from Lance Armstrong: “If you get a second chance at anything in life you have got to go all out”. That seemed to sum up my current situation.

On 31 July, I was given the cells at precisely 12 noon. A steel cylinder was wheeled into the room, and upon opening it, the sense of theatre was heightened by lots of carbon dioxide smoke coming out of the top. If I was in any doubt that this was cutting-edge science, those doubts dissipated with the smoke as it curled around the room.

A simple bag of cells were put into a small bath of room temperature water. When they had defrosted, they were attached to the pump next to me and released into my arm. The drama had begun.

I was monitored closely for any issues over the next couple of weeks. Thankfully, the main potential problem of cytokine release syndrome, which affects your cognitive thought processes, didn’t occur.

A week in, I was told the new cells had been detected in my blood and had started working well. It was such a relief. My life was now at the stage where it might just be able to start again.

Back in remission

Things went very well with the therapy, so I was allowed home on 10 August. I had a few trips back to UCLH over the next few weeks and a regular three-monthly appointment plan for biopsy checks put into place, which I am still on.

I celebrated a year in remission on 31 July 2019.

The future is looking very positive, although no I have no idea how long this will last. In this past year, I have achieved many of my life and cycling goals.

I did my first Century bike ride in the Great Nottinghamshire Bike Race in June and was given a medal by the organisers that has come to represent my journey back to life. It’s a testament to the human spirit and to what medical science can achieve.

We're really grateful to Scott for sharing his story and wish him all the best for the future.

Read more stories from others affected by blood cancers here

You can help Leukaemia UK continue to support others affected by blood cancer by donating here

CAR-T therapy was offered for the first time on the NHS to eligible patients in 2019 at King’s College Hospital, London. The treatment is still in its early stages, but some patients appear to be in remission and clinicians are hopeful the therapy is the latest step towards a cure for blood cancer. CAR-T therapy is set to be rolled out by the NHS for eligible patients in designated hospitals across the UK.