Buckinghamshire cancer patient felt he ‘won the jackpot’ with clinical trial

A Buckinghamshire cancer patient who feels ‘blessed’ to have avoided chemotherapy by taking part in a drugs trial has urged others to participate in research.

Ian Desborough, 71, diagnosed with chronic lymphocytic leukaemia (CLL) in 2017, spoke as researchers mark International Clinical Trials Day today (20 May).

The retired pharmaceutical company marketing director is taking ibrutinib as part of a trial into whether it is effective as chemotherapy in slowing cancer growth.

It is hoped the drug will be effective, safe and have less side effects than traditional treatment of chemotherapy drugs, which include hair loss, fatigue, nausea and infection.

Ian, from Naphill near High Wycombe, was keen to avoid chemotherapy after seeing its impact on wife-of-ten-years Patricia, who passed away from metastatic breast cancer in 2011.

He said: “I was fearing this because my wife had been through very hard-hitting chemotherapy and I understood through my working background how disastrous it can be to the patient’s quality of life. Of course it is effective, but it does have significant side effects.”

Participants in the University of Leeds’ FLAIR (Front-Line therapy in the UK-wide CLL: Assessment of Ibrutinib-containing Regimes) trial are randomly allocated chemotherapy; ibrutinib and similar drug venetoclax or ibrutinib alone.

The grandfather-of-four said: “I thought I’d won the jackpot. Honestly I thought Christmas, birthdays and the jackpot had all come at once. I was so animated about it. The nurse said she had never seen anyone so excited about being told they were going to be treated with a new class of drug.”

Chronic lymphocytic leukaemia (CLL) is a slowly-progressing cancer affecting white blood cells. Ibrutinib stops signals that cancer cells use to divide and grow.

He said: “In 2017, I had a dull ache in my groin so I went to the GP and was told it was a strain. I took anti-inflammatories for a couple of weeks, went back, no improvement.

“Then they did a blood test and I remember the stern look on the GP’s face. They referred me to the haematology unit at Stoke Mandeville Hospital and when I got there I saw the huge letters ‘CANCER’ over the door. It was such a shock and it was actually very difficult to go inside.

“The doctor told me I had CLL and I just sat there thinking ‘my days are numbered’.”

In 2019, he was asked by his consultant if he wished to join the trial, supported by the National Institute for Health and Care Research (NIHR).

He said: “I spent 36 years in the pharmaceutical industry and was involved in some of the biggest clinical trials ever with tens of thousands of participants worldwide and really impressive results which are earth shattering, staggering.

“I knew what clinical trials were all about, so for me I knew from day one that my data involved in the study was going to help future patients getting new treatments.”

“Now, on my last visit to the hospital, the doctor's comment was ‘all the blood screen looks good’.

“I think patients need to look at the opportunity trials present for them as an individual, bearing in mind every individual is difficult with their feelings and emotions. Some people don't want to know, some want to know the details.

“Clinical trials are critically important to improve patient care. If it wasn't for clinical trials, we would not be where we are today, we would be back in the dark ages.”

The trial has recruited 1,498 volunteers from across the UK, including 17 from Buckinghamshire Healthcare NHS Trust.

Professor Manu Vatish, Clinical Director for the NIHR Clinical Research Network Thames Valley and South Midlands, said: “The last two years have demonstrated, more than ever before, the vital importance of clinical research - we have not only trialled treatments around the COVID-19 pandemic but have continued to deliver on clinical trials across all areas of medicine.

“These trials can only be successful when clinical research is delivered by dedicated teams who have real commitment to effective study delivery. Most importantly, these trials would not be possible without the volunteers who give their time and altruistically take part, not knowing whether they will personally benefit or not.

“Without these volunteers, research would come to a halt and new discoveries would stall. Every one of you who takes part is doing something amazing.”

Participating in health research helps develop new treatments, improve the NHS, public health and social care and save lives.

The NHS, public health and social care supports research by giving patients opportunities to take part in trials. Healthy people can also take part so results can be compared to those with a medical condition.

Patients are also encouraged to ask their doctor or health professional about research opportunities and view trials seeking volunteers at bepartofresearch.uk.