A mum from Port Talbot has been given the all-clear from cancer after becoming the first person in Wales to be prescribed a new wonder drug.
The drug, dostarlimab, targets a specific variant of colorectal cancer.
While it is still being clinically trialled, it is already showing remarkable results – avoiding the need for surgery, radiotherapy or chemotherapy.
Carrie Downey was diagnosed a year ago and given dostarlimab infusions for six months. Tests have shown there is no longer any evidence of the disease.
Meanwhile, Janet Baker, a Pembrokeshire grandmother who was the third in Wales to receive the drug, said her MRI scan came back clear just three months into her course.
Previously only available to a small number of people, dostarlimab is now a standard treatment option for all eligible patients in Wales.
This is thanks to the efforts of consultant oncologist Dr Craig Barrington, on behalf of the South West Wales Cancer Centre, which provides care for Swansea Bay and Hywel Dda patients.
It means Wales is the first UK nation and, with Italy, joint first in the world to make it available as a standard option.
Dostarlimab is a form of immunotherapy, a targeted treatment which helps the immune system to destroy the cancer.
A clinical trial in the USA is focusing on a group of rectal cancer patients who all have mutations – or changes – to specific genes called mismatch repair (MMR) genes, which usually help repair DNA.
Bowel cancers with changes to MMR genes often have a higher number of mutated genes. This is known as deficient mismatch repair or MSI-high.
It is quite rare, with between 3.5 per cent and 5 per cent of rectal cancers having the gene defect.
Carrie, a 42-year-old civil servant, was having pains from a previous hernia mesh implant. While investigating this, doctors discovered her cancer. Carrie was diagnosed on 1st September last year.
“Because of its location they said it would be a really difficult operation and I’d be left with a permanent stoma,” she said.
“They decided to try to shrink it first, and that was when I was then referred to Dr Barrington to look at chemotherapy or radiotherapy.
“I had my appointment with him a few weeks later. He said something along the lines of, ‘What would you do if I said we could get the same result, no evidence of cancer, without having a permanent stoma and major surgery?’.
“He had checked my biopsies and knew I had this rare mutation. He said there had been trials, and he was confident he could get the funding because I met the criteria. He asked if I would like to go ahead with it.”
Carrie decided to proceed. She was put on dostarlimab for six months, with each three-weekly IV administration taking around 30 minutes.
“I got tired and had a rash here and there, but nothing compared to chemotherapy, radiotherapy or surgery,” she said.
Partway through her treatment, scans showed the tumour had shrunk significantly. At the end of the course there was no evidence of the disease. Two subsequent scans have confirmed this.
Carrie, a single mum with a 17-year-old-son, is preparing to return to work following her successful treatment. But she knows that the outcome could have been very different.
“If I hadn’t seen Dr Barrington, I would have a permanent stoma bag. It would have impacted on so much of my life,” she said.
“I’m just so thankful to Dr Barrington and his team that I got the chance and that he had looked into the mutation and looking at these new therapies. He has given me my life back. I will be forever grateful to him.”
Dr Barrington said dostarlimab had been available on the NHS for endometrial cancers but not for colorectal cancers. However, the US trial had shown a 100 per cent response – unheard of in oncological care.
He was able to prescribe it to three of his rectal cancer patients – the first three in Wales to have it – all with the MMR gene defect.
“I had to apply through the Individual Patient Funding Request scheme, but I knew I couldn’t keep doing that as eventually they would start declining the requests,” he said.
“And so I looked at whether there was a process to get access to this treatment for the entire population of rectal cancers within Wales that have got this particular genetic defect or change.”
Dr Barrington used the One Wales Medicine process, which determines whether medication not widely available should instead be made available across Wales when a group of patients would benefit from it.
After several months of meetings and discussions, the Welsh Government has now ratified it. “We are now the first UK nation and joint first globally with Italy to have it as routine as an option for treatment,” he said.
“It doesn’t mean the patient has to have it. It’s an additional tool in our toolbox, as it were. But when you’ve got a trial showing 100 per cent complete response it’s difficult to argue against it.
“Patients have avoided an operation and radiotherapy, both of which come with significant issues. So to be one of the first two countries internationally to have access to this treatment is incredibly exciting.”
Another patient already benefiting is 73-year-old mother-of-two Janet Baker from Newport in Pembrokeshire. Janet was diagnosed in February and put on dostarlimab in April.
She said she first went to see Dr Barrington hoping for some good news after being told surgeons could not operate on her cancer.
“In my mind, I was looking at chemotherapy and radiotherapy at best,” said Janet, who has three grandchildren.
“And Dr Barrington said, ‘We have this new drug. There are 12 people in America who have had it and they had been completely cured.’.
“He asked if he could get the funding, would I be interested? I couldn’t sign the paper quickly enough.”
Janet received her three-weekly infusions at Hywel Dda University Health Board’s Withybush Hospital. She was given her eighth and final infusion last month.
“I went to see Dr Barrington no more than two weeks after starting. He said, ‘How are you?’. I said I had no symptoms. There was no bleeding and I felt well. I said, it couldn’t be the drug already and he said it probably could.
“I had an MRI scan three months into the treatment and it was clear. The effect has been absolutely brilliant. For me it truly has been a miracle drug.”
