Doctors said there was no treatment for John’s cancer – now he’s proved them wrong

After four months of increasing back pain, fruitless visits to the GP and one visit to A&E, John Cadwallader was taken to hospital by ambulance, 'unable to move and feeling as if I had been stabbed in the back with a bayonet' .

There he received a blunt diagnosis.

He recalls, “I was sure I had a pulled muscle. But I was told it was cancer and there was no cure for it.'

That was April 2012, and John — an environmental engineer and father of two, then 61 years old — was so numb that he can't remember hearing the word “myeloma,” a form of blood cancer.

But he does remember holding 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 not going anywhere,'” John says.

He was told the average survival rate is five years. It's been 11 and a half years now. John's disease is stable and he has no symptoms, having – in his words – 'bulldozed' his way into a trial of a groundbreaking treatment in America.

He took matters into his own hands when British doctors told him in 2021 that all they had to offer was palliative care.

Despite saying, “My head was spinning in class, I'm not smart,” John had been researching new treatments online for a few years and, completely unaided, secured a place on a trial at the Mayo Clinic in Florida, for CAR-T cell therapy in 2022.

This one-time treatment is a form of immunotherapy, which targets the patient's T cells – blood cells that fight infections – against the cancer cells. Because it was a lawsuit, John didn't have to pay; otherwise it will cost up to £500,000.

About 24,000 people in Britain have myeloma, with 3,000 deaths every year.

Myeloma starts in plasma cells, made in the bone marrow (plasma is a yellowish fluid that makes up more than half of our blood). Changes in the DNA of plasma cells turn them into abnormal myeloma cells, which multiply rapidly.

It is often called multiple myeloma because it can occur in different places; anywhere there is bone marrow, which is in the center of most bones. Symptoms include back pain, repeated infections, bruising, bleeding, and bones that break easily.

Although chemotherapy can reduce the number of myeloma cells, doctors are not yet able to eradicate them completely. CAR T-cell therapy is available on the NHS for some cancer patients – usually children and young people with certain forms of leukemia and adults with certain forms of lymphoma – but not yet for myeloma.

However, a study published in July in the New England Journal of Medicine found that a single dose of CAR T-cell therapy, given to myeloma patients (for whom the standard drugs were no longer working), produced astonishing results, with a reduction in 74 percent in the number of myeloma cases. cancer progression or death.

It is just one of many new treatments for myeloma. Most breakthrough medicines harness the power of the patient's immune system.

'It has been an exciting area over the last five to six years 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 on current treatments, the more likely they are to receive a new treatment.

'Survival rates for myeloma have doubled, sometimes even tripled, in the past ten years, from an average of five years to ten to fifteen years.'

John, a modest but driven man who ran marathons and boxed at a young age, initially tried to shake off his back pain.

“It started on the right side and then radiated everywhere,” he recalls. Myeloma is notoriously one of the cancers that takes the longest to diagnose, with almost a third of cases diagnosed in the emergency department.

'It often manifests in a non-specific way, with fatigue and back pain,' says Professor Jackson. “There is a blood test for this, but it's important to remember.”

This blood test checks for 'M' proteins, produced by myeloma cells. When this test was performed during John's second emergency room visit, his level was 69 – more than ten indicates active disease. John was kept in hospital awaiting cancer treatment, and when he was taken to an oncology unit, his initial resistance faltered.

“I burst into tears and thought, 'I could be dead next week,'” John says. He underwent six months of chemotherapy and the cancer drug lenalidomide, a targeted treatment that disrupts the development of myeloma cells.

“Chemo made me weak,” he remembers. 'My emotions fluctuated depending on how sick I felt. It dawned on me that I might not be able to collect my pension.”

His first treatment reduced his myeloma cells so he could undergo intensive 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 regained his energy. He built a house in Wales and moved there in 2016. But by 2017 his M protein level had reached 23 and he needed more chemotherapy and another stem cell transplant.

Despite switching to a new drug, daratumumab, in 2019, he relapsed again. “The NHS consultant said there was nothing else that could help me,” says John.

'I went to another myeloma expert for a second opinion, who said he could only offer me palliative care. That was terrible.

'I wanted to prove them wrong. I had been looking into CAR T cell therapy since about 2019 and came across a video by Dr. Sikander Ailawadhi, from the Mayo Clinic, about CAR T cell trials there.

'I called Mayo within days of seeing the video and for $170 (about £130) I made a telephone appointment with Dr Ailawadhi. Then I went to him in October 2021 and he said he would try to take me to court.

“The call came on a Thursday in January 2022 and I had to be there on Tuesday,” John remembers.

'I was happy to leave everything behind and go. This was about staying alive. My doctors here seemed surprised. I was never the kind of person to read about cutting-edge medical treatments. But I pushed through it and got it done.”

Dr. Ailawadhi says, “I was surprised at how enterprising John was when he first made contact.”

CAR T cell therapy involves modifying the patient's T cells in a laboratory so that a specific marker that finds a target on the cancer cells is added to them, forming CAR T cells.

These cells are then multiplied many times. The patient receives chemotherapy 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 he spent a week at the Mayo Clinic before the transplant.

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

“Three weeks later I woke up in intensive care to find my sons on 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 center.

“When I went in, I could only stand up for five seconds and the doctors there didn't know if I would be able to walk again.” It cost him $50,000 (£40,000), including hotel costs for his son Mark, 35.

Against all odds, he recovered. And since leaving the US in September 2022, his M level has now dropped to four. Professor Jackson describes CAR T-cell therapy as 'the most amazing treatment we have ever seen for myeloma.

'It hasn't been around long enough to determine whether it can produce long remissions, but it is associated with the best and deepest responses. The results are astonishing.'

“The biggest success of CAR T-cell therapy for John is that it bought him time when he was at the end of the road,” adds Dr. Ailawadhi – and that may include participation in future trials.

John now receives monthly intravenous infusions of antibodies, given to patients with low immune systems. He had to ask for this – another victory for his 'bullying force' as it is only available on a case-by-case basis on the NHS.

“I'm not foolish enough to say I'm fine,” he says. 'So I'm always looking at what's happening in myeloma research and what drugs I could try next – maybe in the US or maybe a trial here.

“It took cancer to make me realize what's important in life: my family, love, other people,” he says, adding that he now spends a lot more time with his sons, Mark and John, 45, who have two children, Johnny. 11, and Alice, seven.

'Johnny was only four months old when I was diagnosed; Four years later Alice was born. I have seen them bloom.

'I have never been happier than in the past ten years. Sometimes, even though I don't believe in God, I look up at the sky and say 'thank you.'