Case study: Research participant says she has been 'gifted a lease of life'
Find out which research studies you can be involved in and how you can take part in research by visiting the Be Part of Research website.
Nicky Hayward: The FLAIR study
Nicky Hayward, 60, from Bath, is one of the participants taking part in the FLAIR study, a randomised trial comparing treatments containing the drug ibrutinib with standard treatment for chronic lymphocytic leukaemia (CLL). She tells us about her experience.
I found out about the FLAIR study through the Haematology team at the Royal United Hospitals Bath NHS Foundation (RUH).
I decided to take part because I was advised that I’d have the best chance of achieving enduring remission from cancer if I were fortunate enough to be randomised to the targeted drugs being trialled. People in my position have only very recently had a far greater chance of living a normal life, stretching well into the future, since the advent of targeted drugs.
It was the most incredible privilege to have been able to enrol in the trial. Not everyone can be accepted and it’s nerve-wracking, once you’ve made up your mind to go for it, waiting to hear whether or not you’ve met all the inclusion criteria.
Everyone in the A12 department and Haematology - including the kind people in reception, the Friends of the RUH volunteers, the phlebotomists and pharmacists, and the medical staff in the connected William Budd ward - played an important part in supporting me and others taking part in the trial. The Trials Team were brilliant, answering endless questions, both when I was considering my options and throughout the treatment period. They were wonderfully reassuring and supportive.
It does feel good to know you’re providing data at the same time as undergoing treatment, as the only reason we have what’s on offer now is that someone before us enrolled in previous trials. Let’s face it, there are risks in everything. We’re all so individual that one in a million of us might have a reaction to a treatment that no one else does. But this goes for all the licenced treatments too.
We do not know the long-term effects of the drugs being trialed now, of course, and that’s one reason why volunteers are needed. What I do know is that even ten years ago – with the treatments and scientific knowledge available then – I would have been unlikely to have lived more than a handful of years beyond diagnosis, whereas now I have the prospect of a future. Should issues crop up in time to come, I reason I’m still ahead of the game as I’ve been gifted a lease of life I would otherwise have been unlikely to enjoy.
In terms of a legacy, aiding scientists with cutting-edge research feels like it’s up there with worthwhile causes we might support. Right now, having opted for the trial feels like a win-win for me: I was able to access the latest treatment option, I am experiencing vastly improved health and the prospect of enjoying ongoing, symptom-free remission whilst contributing to the research data too. It also feels like I’m giving something back for the help and support I’ve received from the fantastic people who run the Oncology Department and the Haematology and Trials teams.
My father died of another type of B-cell cancer – non-Hodgkin’s lymphoma – at the same age that I was when I enrolled on this trial. At the end of his life, he was keen to take part in a trial to help others, even though he knew it was too late to change things for himself. I am aware that there may be a familial link involved here, so for that reason too I was keen to take part in research. I have a daughter in her 20s and I hope that by the time she reaches her mid-50s an effective routine management of this disease will be possible.
Anyone can get involved in health research. Find out which research studies you can be involved in and how you can take part in research by visiting the Be Part of Research website.