Doctors said there was no treatment for John’s cancer

• John’s disease is stable after he joined a cutting-edge treatment trial in America

After four months of escalating back pain, fruitless trips to a GP, plus one visit to A&E, John Cadwallader was taken to hospital by ambulance, ‘unable to move and feeling as if I was being stabbed in the back with a bayonet’.

There he received a blunt diagnosis.

He recalls: ‘I was sure I had a twisted muscle. But I was told it was cancer — and there was no cure.’

That was April 2012, and John — an environmental engineer and father of two, then aged 61 — was in such a daze he can’t recall hearing the word ‘myeloma’, a type of blood cancer.

But he does remember clutching the hand of his son, Mark, then 23, frozen in shock. ‘I looked at Mark’s face and thought: ‘He’s not ready for this, I’m going nowhere,’ ‘ says John.

He was told the average survival rate is five years. It’s now been 11 and a half years. John’s disease is stable and he has no symptoms, after — in his words — ‘bulldozing’ his way onto a trial of a cutting-edge treatment in America.

He took matters into his own hands when, in 2021, UK doctors told him all they could offer was palliative care.

Despite saying ‘my head used to spin in the classroom, I’m not clever’, John had been researching new treatments online for a few years and, completely unaided, bagged himself a place on a trial at the Mayo Clinic in Florida, for CAR-T cell therapy in 2022.

This one-off treatment is a form of immunotherapy, which directs the patient’s T-cells — blood cells that fight infections — against the cancer cells. As it was a trial, John didn’t have to pay; otherwise it costs up to £500,000.

Around 24,000 people in the UK have myeloma, with 3,000 deaths every year.

Myeloma starts in plasma cells, made in the bone marrow (plasma is a yellow-ish liquid that makes up more than half of our blood). Changes in plasma cells’ DNA turn them into abnormal myeloma cells, which replicate at a fast rate.

It’s often called multiple myeloma because it can be found in several places; wherever there is bone marrow, which is in the centre of most bones. Symptoms include backache, repeated infections, bruising, bleeding and bones that fracture easily.

While chemotherapy can reduce the number of myeloma cells, doctors aren’t yet able to eradicate them completely. CAR-T cell therapy is available on the NHS for some cancer patients — typically children and young people with certain types of leukaemia and adults with some forms of lymphoma — but not yet for myeloma.

However, a study published in the New England Journal of Medicine in July showed that a single dose of CAR-T cell therapy given to myeloma patients (for whom the standard drugs no longer worked) yielded astonishing results, with a 74 per cent drop in cancer progression or death.

It’s just one of a raft of new treatments for myeloma. Most breakthrough drugs harness the power of the patient’s immune system.

‘Over the last five to six years, it’s been an exciting area and there is more to come,’ says Professor Graham Jackson, consultant haematologist at the Freeman Hospital, Newcastle-upon -Tyne.

‘The landscape is changing so quickly that the longer we can keep patients going with current treatments, the more likely that they will get a new treatment.

‘The survival rates for myeloma have doubled, sometimes tripled over the last decade, from an average of five years to ten or 15.’

A modest but driven man, John, who ran marathons and boxed when he was younger, initially tried to shrug off his back pain.

‘It began on the right side, then radiated all over,’ he recalls. Myeloma is notoriously one of the cancers that takes the longest to diagnose, with nearly a third of cases being diagnosed in A&E.

‘It often presents in a non-specific way, with tiredness and back pain,’ says Professor Jackson. ‘There is a blood test for it, but it is remembering to do it that’s important.’

This blood test checks for ‘M’ proteins, produced by myeloma cells. When this test was done on John’s second trip to A&E, his level was 69 — more than ten indicates active disease. John was kept in hospital pending cancer treatment, and as he was taken to an oncology ward, his initial defiance faltered.

‘I broke down in tears, thinking: ‘I could be dead next week,’ ‘ says John. He underwent six months of chemotherapy and cancer drug lenalidomide, a targeted treatment that interferes with the development of myeloma cells.

‘Chemo made me weak,’ he recalls. ‘My emotions fluctuated depending on how ill I felt. It hit me that I might not collect my pension.’

His initial treatment reduced his myeloma cells so he could have an intensive course of chemotherapy, with a drug called melphalan, and a transplant of his own stem cells (master cells that can make blood cells).

After this transplant, John slowly got his energy back. He built a house in Wales and moved there in 2016. But in 2017, his M protein level had reached 23 and he needed more chemotherapy and another stem cell transplant.

Despite moving on to a new drug, daratumumab, by 2019, he relapsed again. ‘The NHS consultant said there was nothing else that could help me,’ John says.

‘I went to see another myeloma expert for a second opinion who said he could only offer me palliative care. That was horrible.

‘I wanted to prove them wrong. I’d been looking at CAR-T cell therapy since about 2019 and came across a video of Dr Sikander Ailawadhi, from the Mayo Clinic, about CAR-T cell trials there.

‘I rang up the Mayo within days of seeing the video and for $170 [about £130] I secured a phone appointment with Dr Ailawadhi. Then I went out to see him in October 2021 and he said he would try to place me on a trial.

‘The call came on a Thursday in January 2022 and I had to be there by the Tuesday,’ John recalls.

‘I was happy to leave everything and go. This was about staying alive. My doctors here seemed surprised. I never used to be the kind of person to read about state-of-the-art medical treatment. But I bulldozed through and made it happen.’

Dr Ailawadhi says: ‘I was surprised at how enterprising John was when he first made contact.’

With CAR-T cell therapy, the patient’s T-cells are modified in a laboratory so that a specific marker, which seeks out a target on the cancer cells, is added to them, forming CAR-T cells.

These cells are then multiplied many times. The patient is given chemotherapy for three days before the transplant to reduce the current T-cells in the body.

John stayed with his friend Andy for the five-hour T-cell collection, while for the transplant he stayed at the Mayo Clinic for a week.

He was expected to remain in the U.S. for up to six months for monitoring as part of the trial protocol, but within months of the treatment, in June 2022 John collapsed with a bacterial infection.

‘I woke up in intensive care three weeks later to find my sons either side of my bed, holding my hands,’ he says. John had developed sepsis and had to leave the trial, spending more than two months in a rehabilitation centre.

‘When I went in, I could only stand up for five seconds and doctors there didn’t know if I’d walk again.’ It cost him $50,000 (£40,000), including hotel expenses for his son Mark, 35.

Against all odds, he recovered. And since leaving the U.S. in September 2022, his M level is now down to four. Professor Jackson describes CAR-T cell therapy as ‘the most amazing treatment we’ve ever seen for myeloma.

‘It’s not been around long enough for us to work out if it can give long remissions, but it’s associated with the best and deepest responses. Results are stunning.’

‘The biggest success of CAR-T cell therapy for John is that it has given him time, when he was at the end of the road,’ adds Dr Ailawadhi — and that potentially includes for joining future trials.

John is now having monthly intravenous infusions of antibodies, given to patients with low immune systems. He had to ask for this — yet another victory for his ‘pester power’, as it’s only available on the NHS on a case-by-case basis.

‘I’m not foolish enough to say I’m all right,’ he says. ‘So I am always looking to see what’s going on in myeloma research and which drugs I could try next — perhaps the U.S. or maybe a trial here.

‘It took cancer to make me realise what’s important in life: my family, love, other people,’ he says, adding that he spends much more time now with his sons, Mark and John, 45, who has two children, Johnny, 11, and Alice, seven.

‘Johnny was only four months old when I was diagnosed; Alice was born four years after. I’ve been able to see them blossom.

‘I’ve never been happier than in the last decade. Sometimes, even though I don’t believe in God, I look up at the sky and say ‘thank you’.’