'I was at death's door six months ago with no options left - then something out of a sci-fi movie happened'

Joe Murphy was once a fit and healthy bar manager and a staple member of staff at some of Manchester's best known nights out, including Sankeys and Warehouse Project. But that changed when, aged just 50, he was admitted to hospital and told the devastating news that he had life-threatening cancer.

In May 2015, Joe became unwell and was admitted to hospital with pneumonia. It was discovered that Joe was suffering from chronic lymphocytic leukaemia (CLL), a type of cancer of the blood and bone marrow.

After a stem cell match couldn’t be found for a bone marrow transplant, Joe started treatment at The Christie cancer treatment centre in south Manchester - but then was hit with another horrific blow as his body became resistant to the drugs doctors had used to force his cancer into remission. With a collapsing immune system, he developed sepsis and meningitis and was in and out of hospital before doctors discovered cancer in his spinal fluid, telling Joe he would likely die.

Joe was 'on death's door' and had no options left, until 'something out of a sci-fi movie happened'. With no other options left, Joe was offered the chance to participate in an early phase (phase I) clinical trial at The Christie NHS Foundation Trust for a new drug that could be a breakthrough for patients like him. The drug is so new that it doesn't have a name - currently being known as NX-5948. And incredibly, his latest blood tests show no sign of the disease.

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Talking about his experience, Joe, a bar manager from Hulme who has worked at some of the UK’s biggest festivals, said: “I was at death’s door six months ago with no options left. Mentally I wasn’t in a good place.

"It’s been very tough, and if it wasn’t for this clinical trial I wouldn’t be here. This is an incredible drug like something out of a sci-fi movie. The science is amazing. It’s kept me alive and well since June last year."

NX-5948 is for the treatment of patients with CLL whose disease has come back after previous treatment or the cancer has stopped responding to treatment. The NX-5948 is taken in capsule form once a day, and Joe agreed to take part in research at the National Institute for Health and Care Research (NIHR), Manchester Clinical Research Facility at The Christie, starting his first treatment in June 2023.

The drug, developed by Nurix Therapeutics, is in a new class of treatments for blood cancers known as ‘degraders’. It gets rid of a protein in the cell that is responsible for driving cancer growth by putting it in the cell’s ‘dustbin’, known as the proteasome, which removes unneeded and damaged proteins.

CLL can develop a resistance to drugs currently available to treat the disease, and this new type of drug could resolve this problem. Joe is on the dose escalation part of the study, and has tripled the dose since the start of the trial.

He now takes six capsules a day, feels fit and well and has monthly visits to see his doctor and scans every three months. His latest blood tests could not find any evidence of the CLL.

"I’m putting weight back on, my blood count is fine, my lymph nodes have shrunk back to near normal, and it’s worked successfully in getting rid of the cancer in my brain, which is such a relief. It’s been a very difficult nine years, but I can now look to the future and plan to celebrate my 60^th birthday in December," Joe added.

Dr Emma Searle, consultant haematologist at The Christie, and the principal investigator for the trial said: “This might be the breakthrough we’ve been looking for in the treatment of CLL. The new trial drug is designed to eliminate leukaemia from cells by degrading a critical growth protein.

"It works differently to current treatments that block the same protein. Sometimes CLL cells develop a resistance to existing drugs, which it seems this new drug can overcome.

“This is a very early phase clinical trial so we’re still working out what the highest safe dose can be. To already see some of our patients like Joe responding so well to the treatment, with minimal side effects is very promising.

"There has been a dramatic improvement in his condition. Given it’s at such an early stage of development, the results we’re seeing are impressive and make us cautiously optimistic that we have found a new way to treat patients with difficult to treat CLL. There’s still a lot of research to do, but potentially this drug could be an exciting breakthrough for patients with this type of leukaemia.”

CLL is the most common leukaemia diagnosed in adults (38 per cent of all leukaemia cases). 40 per cent of all new CLL cases in the UK are diagnosed in people aged 75 years or over, and over 3,803 people are diagnosed with CLL in the UK every year.

This commercial clinical trial is funded by Nurix Therapeutics. It is recruiting patients at several hospitals in the UK and abroad.

Any patients interested in taking part in clinical trials should discuss this option with their consultant or GP. Not all patients will fit the criteria for a specific trial. While clinical trials can be successful for some patients, outcomes can vary from case to case. More information about taking part in clinical trials can be found here.