‘A miracle trial drug so new it doesn’t have a name has shrunk my tumour by 60%’

A deli owner has hailed a miracle new drug trial after seeing his aggressive bladder cancer finally shrink by 60 per cent.

The experimental drug is so new that it doesn’t yet have a name but it has proven to not only slow it, but kill it. Paul Simmonite’s ordeal began in August 2021 when he noticed blood in his urine, leading to an emergency visit and subsequent discovery of a cancerous tumour on his bladder.

After undergoing successful surgery to remove his bladder, prostate, and lymph nodes, the 53-year-old was later dismayed to find the cancer had returned in May 2022, spreading to his pelvis and liver despite chemotherapy and immunotherapy treatments.

He then heard of a new targeted chemotherapy experimental drug on trial at The Christie, in Manchester, that recognises and attaches itself to protein found on the surface of bladder cancer cells – before killing them. Now, having been on the clinical trial for over a year Paul has been amazed to see the cancer in his liver shrink by 60 per cent.

An area of pelvic bone treated with radiotherapy is now stable. Every week he travels from his home in near Colne to The Christie NHS Foundation Trust to have the drug given intravenously through a tube into his arm.

Paul, who runs deli Dobsons Cooked Meats, in Keighley, with wife Claire, told the Express: “I would say to anyone, if standard treatment isn’t working for you, then ask about clinical trials. I’m so glad I did. You are so well cared for when on a clinical trial and I see a doctor every week, so there’s nothing to worry about.

“I just let them do what they need to do. I feel well in myself, although I’m very tired. I’m lucky to have the support of my wife, Claire, who runs the business for us on a daily basis.”

Paul and Claire Simmonite at The Christie

Bladder cancer is the 11th most common cancer in the UK, accounting for 3 per cent of all new cancer cases, with Cancer Research UK predicting in the future there could be 10,700 new cases every year in the UK by 2038. Meanwhile urothelial carcinoma is the most common form of bladder cancer, accounting for around 90 per cent of cases.

A string of celebrities have recently revealed they are battling it such as award-winning artist Tracey Emin, who went public to reveal she’s had a stoma fitted to highlight the disease she has had since 2020. While earlier this month ex-F1 racing boss Eddie Jordan, 76, revealed he too is fighting bladder cancer.

In October, the disease was highlighted again when it claimed the life of US musician and Grateful Dead bassist Phil Lesh, at the age of 84. While legendary singer Frank Sinatra was one of the first celebrities to ever admit he had bladder cancer, before he subsequently died in 1998 from a heart attack.

Paul himself realised something was wrong when popping to the loo at his deli and to his horror passed blood in his urine. Despite feeling fit and welly, and having had no previous symptoms, he was diagnosed with stage 3 urothelial carcinoma, the most common type of bladder cancer.

Paul and Claire Simmonite at their Deli

Paul had surgery to remove the bladder, prostate and lymph nodes at his local hospital in October 2021. Due to Covid restrictions at the time, he spent three weeks in hospital including four days in intensive care without being allowed visitors.

Initially the operation appeared to be successful with a scan after the operation showing no signs of cancer. However, in May 2022 he started to experience extreme pain in his pelvis which meant he struggled to walk, and a CT scan revealed his bladder cancer had returned and spread to his pelvis and liver.

Despite having chemotherapy and immunotherapy, the cancer progressed. With no other treatment options available to him, Paul was told about a clinical trial, which was recruiting patients at The Christie, and that he could be eligible for it.

This is because high levels of the specific protein the drug targets are found on the surface of many bladder cancer patients’ tumours. He agreed to take part in this research at the National Institute for Health and Care Research (NIHR) Manchester Clinical Research Facility (CRF) at The Christie and started having treatment in September 2023.

Dr Louise Carter, consultant oncologist at The Christie NHS Foundation Trust

Dr Louise Carter, consultant oncologist at The Christie who is leading on this clinical trial at The Christie said: “Paul has responded really well to this experimental therapy and it’s hard to see any cancer on his scans in the liver. This clinical trial indicates that this new experimental drug could deliver promising results for bladder cancer patients, and potentially for other cancers.

“Almost half of the patients with bladder cancer who took part in the study benefited from the treatment, and it was generally well tolerated, with few side-effects. This is an important development in the treatment of this cancer, and I hope it will change clinical practice in the future.

“However, more research is needed to confirm these exciting results in a large group of patients. We are now planning to do further work with this drug in other cancer types including breast and lung cancer very soon.”

To support The Christie Charity visit here.

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Image Credits and Reference: https://www.lancs.live/news/lancashire-news/a-miracle-trial-drug-new-30688971

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