Date: 20 July 2017
A solicitor from Milton Keynes has urged people to take part in NHS research after a trial drug for blood cancer helped him return to work.
Michael Howard, 65, is practising family law again after taking part in a trial of a new drug which it is hoped will produce fewer debilitating side effects.
He was diagnosed with chronic lymphocytic leukaemia (CLL) in July 2015, for which symptoms can include an increased risk of infections, persistent tiredness, swollen glands in the neck, armpits or groin and unusual bleeding or bruising.
Fludarabine, cyclophosphamide and rituximab (FCR) is the standard treatment to tackle these symptoms though this can lead to side effects such as infections and breathing difficulties.
The Front-Line therapy in CLL: Assessment of Ibrutinib + Rituximab (FLAIR) study, run by the University of Leeds, is comparing FCR with new drug ibrutinib for people with previously untreated CLL. Both are taken as tablets alongside rituximab, which is administered through a drip in hospital.
Mr Howard enrolled in the trial - funded by Cancer Research UK - in July 2015 at Milton Keynes University Hospital and was clear enough from the symptoms of the disease and any side effects from treatment to return to work in February 2016.
Mr Howard said: “It started in November 2014 when I had a sudden and unexplained serious facial swelling, which was treated as an allergy in A&E at the time.
“A few months later I saw a consultant at the John Radcliffe Hospital in Oxford who said she didn’t think it was an allergy because I had no repeats or sufficient changes to my lifestyle.
“After some blood tests and a CT scan, enlarged lymph nodes were revealed. I was then sent to the haematology department at Milton Keynes University Hospital, who diagnosed me with CLL in early July 2015.
“Everything happened reasonably quickly. Soon after diagnosis I was able to get on the trial and didn’t feel much anxiety about it. I was glad I was able to get on with it.”
He said: “My thought in taking part was that ibrutinib, which is the alternative to the standard FCR treatment for my condition, might be beneficial to me.
“Cancer need not be the death sentence it used to be, thanks to new medical treatments.”
The father-of-one returned to his job part-time in February 2016 and full-time two months later and was able to play his beloved table tennis again from September 2015.
Mr Howard said: “I haven’t had any flare-up or facial swelling since I started treatment, which previously caused me difficulty and required hospitalisation on several occasions over three months while that was being dealt with.
“Now that I haven’t had any more swellings, it’s meant I’m able to crack on with stuff.
“The treatment doesn’t seem to have any side effects other than trivial things like breakages of my nails and occasionally getting a bit tired. It doesn’t stop me from doing anything.
“On the whole I’ve managed to live as normal a life as I can. That includes playing sport. I play league table tennis and I had expected once I got the CLL diagnosis that I was going to miss out on at least a season’s play.”
Mr Howard plays in the Milton Keynes league for Newport Pagnell Table Tennis Club.
He said: “Once I started the treatment I ended up playing about 70% of the available matches in the 2015/16 season.
“As I am on a clinical trial, there are more samples taken and analysis done, which provides me with more oversight and analysis of my condition.
“I felt that anything I did through the trial would also help other people in the future. The treatments that have been developed to date have all been done by people who went through this 10, 15, 20 years ago.
“Without research, I would not have got the medical support and interventions that have already happened.”
Sara Greig, research implementation manager at Milton Keynes University Hospital NHS Foundation Trust, which runs the hospital, said: “There are short and long term side effects associated with FCR, such as infections, so newer treatments such as ibrutinib have been developed.
“Ibrutinib is a targeted therapy called a kinase inhibitor. This means it works by targeting specific receptors present on the cancer cells and it interferes with the function of Bruton's tyrosine kinase, an enzyme which is found in excess on cancerous white blood cells.
“It has shown promising results in CLL patients who have previously been treated and the aim of the trial is to assess whether ibrutinib and rituximab is a superior treatment to FCR.
“We have had positive feedback from patients about the FLAIR trial. They feel the study may benefit them but are also keen to be part of something that may improve treatment for future patients.”
CLL is a type of cancer where bone marrow produces too many white blood cells, called lymphocytes, that are not fully developed and do not work.
Patients are given blood tests, a bone marrow test, a heart trace and a CT scan to see if they are eligible to take part in the study, which is recruiting until January 2020.
They are randomly selected by a computer to determine whether they are given ibrutinib and rituximab or FCR.
The FLAIR trial has so far recruited more than 625 patients across 100 hospitals in the UK. It is led by Professor Peter Hillmen at the Leeds Institute of Clinical Trials Research at the University of Leeds.
The trial is also supported by the NIHR Clinical Research Network (CRN) Thames Valley and South Midlands, an NHS-funded body which works to ensure research can take place in the health service.
For Cancer Research UK trials seeking volunteers visit http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial.
Research helps develop better treatments for conditions like cancer to improve NHS care.
This includes trials of new drugs to test whether they are more effective than current treatments.
Patients are encouraged to ask their doctor about research opportunities and view trials seeking volunteers at The UK Clinical Trials Gateway www.ukctg.nihr.ac.uk.