'Cancer doesn't care, but I'll walk my daughter down the aisle' - Longridge dad in pioneering cancer trial

A Lancashire man who has been living with incurable blood cancer for more than a decade has become the first patient to take part in a potentially game-changing clinical trial.

The research is investigating whether a new drug could reduce the potentially dangerous side-effects of cutting-edge cancer treatment.

Jason Walker, 57, from Longridge, was diagnosed with stage 3 multiple myeloma in 2014, at the age of 45, after suffering persistent back pain and double vision.

Now, after two stem cell transplants, years of remission and a recent relapse, Jason is taking part in the TOPICAL clinical trial at The Christie NHS Foundation Trust in Manchester.

The UK-led study is testing whether an experimental anti-inflammatory treatment, POLB 001, can prevent or reduce Cytokine Release Syndrome (CRS), an immune reaction that can occur after powerful cancer immunotherapy treatments.

For Jason, who runs a kitchen painting business, and has continued working throughout much of his treatment, taking part in the trial represents both a new opportunity in his own treatment and the chance to help future patients.

He was diagnosed after tests revealed multiple myeloma had spread throughout his body, causing chronic bone pain, particularly around his pelvis.

The cancer had also affected the area around his pituitary gland and was pulling on his optic nerve.

Doctors told him the disease was incurable and that treatment would focus on achieving long-term remission and extending his life.

“It was a huge shock,” said Jason. “One minute I was working, playing squash and getting on with family life and the next I was being told I had terminal cancer.”

He underwent intensive chemotherapy and, despite his diagnosis, continued working. But just two days after completing treatment, Jason suffered a heart attack while working in a customer’s kitchen in Liverpool.

“I thought I had got through the hardest part and then I had a heart attack caused by a blood clot possibly due to the chemotherapy,” he said.

“It was frightening, but thankfully I recovered.”

Over the following decade, Jason underwent two stem cell transplants, both of which were successful.

He then enjoyed five years in remission and returned to an active family life, playing squash and padel and going to the gym.

But in November last year, Jason noticed several soft, spongy lumps developing on his head. Tests confirmed that his myeloma had returned.

After trying a three-drug combination which his body could not tolerate, leaving him so weak that he struggled to climb the stairs, Jason was referred to The Christie to see whether there were clinical trials he might be eligible for.

He became the first patient recruited to the TOPICAL clinical trial and last month started 14 cycles of treatment, while continuing to work.

"This isn’t my first experience of taking part in research and I'd rather be on the trial than not," he said.

"It gives you a security blanket. I feel very lucky to be on the trial at The Christie and I hope it works, not just for myself, but for the wider myeloma warriors out there.

“Any hope in a difficult situation is good. I feel blessed to be on the trial, it's like I've won something better than the lottery.

"I try to keep a positive attitude and laugh about cancer, but I do sometimes get mad and swear at it," he said. "Cancer doesn't care, but I won't let it get to me."

Jason and his wife, Michelle have two grown-up children. They are also grandparents to seven-year-old Harper, their son Oliver’s daughter.

Jason is particularly determined to beat the cancer again ahead of his daughter Abbey's wedding in Montenegro next May.

"I need to get through this as I’m giving her away, and want to be well enough to walk my beautiful daughter down the aisle." he said.

Looking ahead, Jason hopes his involvement in the TOPICAL trial could benefit future patients as well as himself.

"If taking part helps improve treatment for other people living with myeloma, that's something really worthwhile," he said. "I've been living with this disease for 12 years and you have to keep looking forward. I'll keep fighting and making the most of every day."

TOPICAL is led by The Christie NHS Foundation Trust and will take place at five other NHS hospitals across the UK. Around 30 patients with relapsed or treatment-resistant multiple myeloma are expected to take part.

Participants will receive POLB 001 alongside an approved bispecific antibody therapy. Researchers will investigate whether the oral treatment can prevent or reduce CRS following treatment with teclistamab, a newer type of immunotherapy.

Dr Emma Searle, consultant haematologist at The Christie, who is the chief investigator on the TOPICAL trial said: “Immunotherapy treatments are transforming survival rates for patients with difficult-to-treat blood cancers, but their use will continue to be restricted until we find a way to deliver them safely outside of specialist hospitals.

“Because of the risk of Cytokine Release Syndrome (CRS), which is unpleasant and can be dangerous, many patients can’t be treated near to home, which is a real problem.

“Many patients have to stay in hospital to receive immunotherapy, and some must travel long distances for treatment in specialist centres.

“If this new therapy can safely reduce the risk of CRS, it could help give these treatments near to or in peoples’ homes. ]

“Ultimately, our aim is to help more patients benefit from these life-saving therapies while reducing the burden of treatment on patients, families and the NHS."

Early results from TOPICAL are expected later this year.