A father who feared his terminal cancer diagnosis meant he would never see his daughter marry has lived to walk her down the aisle – thanks to a new miracle drug.
Railway worker Terry Berry, 61, was horrified when food poisoning from a fish pie in May 2020 led doctors to discover he was stricken with an inoperable 10cm tumour on his liver, spread from bile duct.
Shattered Terry, of Wigan, Greater Manchester, was given just 12 months to live and it dawned on him not only would be never see his eldest daughter Carla marry but he would never meet his fourth grandchild.
But almost four years later – after being offered trial drug ivosidenib at Manchester hospital The Christie – Terry has seen both those events become reality and is still battling on.
Cancer patient Terry Berry on his daughter Carla’s wedding day (Image: handout)
Terry said: “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.
“In February 2021 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.
“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.
“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.”
Proud family man Terry Berry with his wife Elaine and daughters Carla and Nicola (Image: handout)
Terry explained he had struggled with chemo but found ivosidenib easier to take, remarking: “I had chemotherapy for about 15 months. It was so tough I eventually told doctors I couldn’t take it anymore.
“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.”
Ivosidenib (also known by the brand name Tibsovo) 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.
Liverpool FC fan Terry had been fit and well when food poisoning led to a protracted hospital stay and a series of tests to tackle his stomach and bowel issues in lockdown in May 2020.
After an ambulance took him to A&E, investigations found a parasite in his bowel. On scans doctors at his local hospital saw a shadow on his liver and discovered a 10cm tumour.
He was diagnosed with cholangiocarcinoma, which is a type of cancer that forms in the bile duct of the digestive system. Unfortunately, it was inoperable.
With few treatment options available, the father-of-two was referred to Europe cancer specialists The Christie.
Elaine and Terry Berry (Image: handout)
He underwent 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).
That meant he may benefit from this treatment at the National Institute for Health and Care Research (NIHR) Manchester Clinical Research Facility (CRF) at The Christie and started his first treatment in September 2023.
Doctors thought he might respond well to the trial drug as he had a liver biopsy that helped explain his genetic makeup – revealing his abnormal amount of enzyme IDH1.
This 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 recent scans show the drug is keeping his cancer stable and he is even gradually putting on weight again.
He added: “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.”
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
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.”
He added: “Clinical trial evidence shows 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.”