'Food poisoning saved my life'

Aged just 58 in May 2020, the height of the Covid-19 lockdown, Terry spent a Bank Holiday weekend struggling with stomach pain. He was admitted to hospital, where doctors told him his symptoms were down to food poisoning after a parasite was found in his bowel.

"The doctor asked me 'who is the cook in your house?' And said 'you've got a bad bout of food poisoning'."

Tests during his hospital stay revealed worrying signs, before Terry was then diagnosed with bile duct cancer - a rare form of cancer with poor chances of survival, typically not discovered until in its late stages. When Terry was diagnosed, his eldest daughter was planning her wedding and his youngest was seven months pregnant.

He didn't think he'd make the wedding or see his grandchild. Yet, thanks to taking part in a research clinical trial, his cancer has stabilised and he is, incredibly, still alive, has been able to meet, and walk his eldest daughter down the aisle.

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A few days after he was sent home from hospital in May 2020, Terry, from Goose Green in Wigan, was called back in for a scan. He assumed it was to make sure that the food poisoning had abated, but staff instead told him that a shadow had been found on his stomach during tests carried out during his hospital admissions.

Examinations revealed a 10cm tumour and he was diagnosed with cholangiocarcinoma, a type of cancer that forms in the bile duct of the digestive system. It was inoperable.

He had previously been fit and well, but Terry said he knew it must be serious when he and his wife, Elaine, were called in for an appointment with a doctor as the pandemic raged on. The news 'turned his life upside down'.

Terry told the Manchester Evening News: "We were sat with the doctor and two Macmillan nurses, the doctor said 'I'm sorry to be the one who has to tell you this, you have terminal cancer.'

"Immediately I was wanting to know how long I've got - is it six days, six months, six years? The doctor said they couldn't tell me, but I was told I was being put under the care of The Christie."

Terry started treatment with the renowned cancer centre, The Christie, in south Manchester and was given 12 months to live. The Liverpool FC fan feared he wouldn't see his eldest daughter get married, and thought 'there was every chance' he wouldn't meet his fourth grandchild.

With few treatment options available, he underwent gruelling chemotherapy as part of a clinical trial until March 2022, by which time his tumour had shrunk by almost a quarter and he came off treatment for almost a year and a half and his condition remained stable.

When the cancer started to progress and spread to his lungs, Terry was then offered the chance to participate in a second clinical trial for the oral drug ivosidenib, as his tumour had a mutation (IDH1), which meant he may benefit from this treatment at the National Institute for Health and Care Research, Manchester Clinical Research Facility, at The Christie.

He started his first treatment on the new drug in September 2023.

The new drug ivosidenib, also known by the brand name Tibsovo, which has recently been approved for use on the NHS. Ivosidenib is a first-in-class targeted therapy used to treat patients with bile duct cancer that has spread to other parts of the body or been previously treated.

Doctors thought Terry might respond well to the trial drug as he'd had a liver biopsy, which helped them understand his genetic makeup and identified he had an abnormal form of an enzyme called IDH1 (short for isocitrate dehydrogenase-1).

The IDH1 enzyme plays an important role in making energy for cells. When the IDH1 enzyme is mutated, metabolic changes in the cell lead to the development of cancer. Ivosidenib blocks the mutated enzyme and may help slow or stop the cancer from growing.

Terry now takes two tablets of ivosidenib a day and his recent scan show the drug is keeping his cancer stable. Due to the disease, his weight dropped, but he has got his appetite back and is now gradually putting on weight.

Terry said: "I had chemotherapy for about 15 months. It was so tough I eventually told doctors I couldn't take it anymore.

"So, in February 2021, my eldest daughter, Carla, brought her wedding forward a year and got married during lockdown with just me, my wife Elaine, and her husband-to-be's parents in attendance. They weren't even allowed to have their own children there.

"They made that incredible sacrifice to allow me to give her away. My youngest daughter, Nicola, was seven months pregnant when I was diagnosed, and I really didn't think I'd get to meet Archie but he's now three years old and every moment with him is precious.

"Elaine has been fantastic and even threw a 60th birthday party for me a year early because we were so sure I wouldn't make it to that milestone. I'm still not back to my former self, and life is far from what it was.

"I have good days and bad days, but this drug is far kinder to the body than chemotherapy, and I've been lucky that I haven't experienced too many side effects. Thanks to these tablets, Elaine and I celebrated our 40th wedding anniversary last year and we can enjoy weekends at our caravan in Garstang with the family.

"I would say to anyone, if you're offered a clinical trial, go for it and don't be frightened. On the trial I've been very well looked after by a fantastic team, closely monitored and there's always someone at the end of the phone if needed."

Dr Mairéad McNamara, consultant oncologist at The Christie said: "Fortunately a liver biopsy had been taken when Terry was first diagnosed so this could be used for molecular profiling and it was discovered that his tumour had the IDH1 mutation, so he could be treated with ivosidenib. This is an example of how it is possible to personalise treatments for patients rather than use the traditional 'one size fits all' approach, which can potentially lead to better results.

"Clinical trial evidence shows that ivosidenib can potentially extend lives while offering a good quality of life and delay the progression of cancer. A vital part of research is to identify improved targeted treatments, and without the help of patients like Terry, this wouldn't be possible.

"It is great that this new drug is now available on the NHS for patients with bile duct cancer who have the IDH1 mutation, so that more people like Terry can potentially be helped."

Bile duct cancer (also known as biliary tract cancer) is a rare cancer, with a poor prognosis and around 1,000 people are diagnosed with it every year.

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.