A grandfather whose cancer had spread throughout his body has told how he beat the disease using an experimental therapy. Stephen Cossins, 71, was diagnosed with chronic lymphocytic leukaemia (CLL), a rare type of cancer that affects the blood and bone marrow.
But instead of standard chemotherapy, when the cancer began to spread around his body, he took part in a clinical trial looking at drugs that block the growth of the disease. He was put on Ibrutinib three times a day for three months, before then taking another drug, venetolclax, as well.
Two years later, he has no signs of cancer. He said: “It was the best thing I ever did. I entered the trial three years ago and was cured, cancer free, after two years. It’s amazing.
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“My wife and children are all delighted. I don’t think any of us believed this day would come. It’s wonderful but I’m so relieved it’s over. “I’m one of the lucky ones. I’ve been successful on the trial but I hope it can help other people going through the same thing.
“If anyone is ever invited to take part in a research study, I’d say put your faith and trust in the nurses and doctors. They know what they are doing.
“You have everything to gain and nothing to lose. And you could save the lives of people living with cancer in the future.”
The National Institute for Health and Care Research (NIHR), which helped fund the study Mr Cossins took part in, has launched a Shape the Future campaign to urge people to join health research. It runs the Be Part of Research service, which has attracted more than 150,000 people so far.
This new digital ‘match-making’ service helps people to find and take part in health and care research across the UK. People can register their interest via the Be Part of Research website or via the NHS App if they live in England, and they can choose which health conditions they are interested in, such as diabetes, cancer and back pain, or sign up as a healthy volunteer.
People can also choose what type of research they want to do, such as drug trials, scans, focus groups or filling in online questionnaires. Mr Cossins said his diagnosis “came as a complete shock”.
He said: “I had no symptoms and I’ve always been a very well person. I hadn’t had a day off work sick in over 20 years.
“You always think the C word happens to other people. When they told me, I thought ‘that’s it then’. You feel so much inevitability about the whole thing.”
Mr Cossins was diagnosed in 2016 and remembers the feeling of shock: “My children were distraught when I told them and my wife was hit harder by the news that I was. She was devastated.”
The grandfather, who has three grandchildren aged eight, seven and four, said of them: “I couldn’t tell them the news. They were just too young and I didn’t want them to worry.”
In 2019, his cancer began to spread aggressively. At its worst, he began to lose weight, and felt extremely tired and lethargic. In November 2019, Mr Cossins, from Amersham in Buckinghamshire, was invited by a consultant to take part in the FLAIR trial into drugs.
“Initially I didn’t think that taking part in the trial was for me,” he said. “I thought that I would prefer to have chemotherapy because it’s the standard treatment. I thought ‘do I really want to be a guinea pig for new drugs?’
“But after the consultant and nurses explained that by taking these drugs as part of the trial, there was a possibility of being completely cancer free in two years, I thought it was worth a shot. I had to roll the dice. I’ve now got more time to spend with my grandkids, my family and my wife.
“We’ve been married for 46 years. I think we’ll celebrate being cancer-free properly with a short break in Devon or Cornwall.”
NIHR chief executive and chief scientific adviser to the Department of Health, Professor Lucy Chappell, said: “The NIHR funds and supports research that aims to make a difference to patients across the country – and even further afield. Our research covers all areas from the laboratory right through to the clinic.
"It leads to new treatments that benefit us in so many different ways, across so many different areas of health and care. Patients and the wider public are vital to this research – it is you who help researchers find the cures, treatments and breakthroughs that can help us, our friends and families to live the best and healthiest lives possible.”
Health minister, Will Quince, said: “The volunteers who are taking part in promising research – including one who was cured of cancer – are helping researchers find medical breakthroughs and ultimately helping the NHS to save lives.”
“NIHR’s research studies can lead to billions of pounds in savings for the NHS and cut waiting lists through faster diagnosis and enhanced treatment – but it can’t take place without volunteers, so I encourage anyone eligible to sign up.”
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