“The important bit in my opinion is the acceleration because it’s not that it doesn’t get through the system and get to trial. It’s the fact it’s being accelerated through so we get the benefit of it as fast as possible. That concept of accelerating new drugs through the system is fantastic.”
Those are the thoughts of Professor Lelia Duley, 62, from Southwell in Nottinghamshire, as she hailed the Trials Acceleration Programme, funded by Cure Leukaemia, in delivering pioneering Clinical Trials.
Talking ahead of World Cancer Day, Lelia, 62, from Southwell in Nottinghamshire, shared her emotional story of taking part in one after relapsing following a spell in remission from chronic lymphocytic leukaemia (CLL).
Lelia, who was previously director of the Nottingham Clinical Trials Unit at the University of Nottingham, was more than aware of Clinical Trials – but didn’t expect to be taking part in one.
Lelia giving a lecture in her role as director of the Nottingham Clinical Trials Unit in 2016
But after entering the Clarity trial in 2017, she now champions their importance even more strongly than before.
“I feel good about it. I passionately believe in Clinical Trials as a really important way of working out what helps and harms and having worked in that area for most of my professional life, it’s been quite a journey to move to the other side of the fence. It gives me a lot of personal satisfaction to have taken part – and I am really keen to get others involved in more research, too.”
Talking up the story from the start, her life changed in 2009 when the mother-of-two discovered a lump near her shoulder blade. With her medical background, she knew it had to be investigated but certainly didn’t expect the diagnosis she received.
“I was told I had CLL and I just said: ‘What’s CLL?’ I didn’t know at that time. The consultant gave me a brief resume and I got the train home in a state of shock. With CLL there’s no cure, so there’s no reason to treat unless your symptoms get quite bad. At that time, standard treatment was chemotherapy. So all I took in when I first got told was that I had leukaemia. It’s a double whammy – you’re told you’ve got cancer but you’re also told we’re not going to treat you. I was 51 at the time. This was completely not in my life plan. I had a young family. It was a huge shock.
At the Olympic Park in 2012 with her husband and two children
“My husband was on a work trip in Brazil at the time so I was on my own with the kids at the time. But he cut it short and when he returned we went to see the haematologist in Nottingham who was really helpful – excellent really. He explained everything very clearly and very well. It was a huge help.”
Initially, she was put on the “watch and wait” programme – although she stresses that for the CLL community it’s often “watch and worry”.
But within a year her cancer had progressed.
“My tiredness had got a lot worse. I got breathless just going upstairs. I felt awful. It wasn’t a surprise when I was told I needed treatment. It was more of a relief because I was sliding downhill.”
Lelia with her daughter Beth
She was given a form of chemotherapy from September 2010 to early 2011 – and responded well.
“I had four years of relatively normal life and then I began to relapse. It was a point in my relapse where my new consultant warned me I was going to need treatment again.”
The relapse followed a series of infections, including the painful skin condition shingles.
“You always get more infections with CLL. In the winters, I would cough throughout with one virus or another. I just had a year when I was never well – it was an annus horribilis. I had a work trip to India and there was someone behind me who coughed all the way there and on the way back, I had her cough. I couldn’t shake it off and after three weeks it turned into pneumonia. I had to get antibiotics for that and I think I had a reaction to those.
I was lucky because I’d got a strange blood test result at the clinic. They thought it was a one-off but said I should go and get another one done. When I went the nurse said, while I was there, that she’d take a full blood count. At the time I thought ‘what a waste of NHS money’ but that evening the haematologist on call at the hospital phoned me and more or less said ‘are you still alive?’ because I had no neutrophils.
I was quite lucky. They picked it up on a test that I didn’t think I needed. I just got over that and then I got shingles where I was in hospital for a couple of weeks. After getting over that, it was also clear my CLL was deteriorating.”
Lelia on holiday with daughter Beth and son Sam
At the end of 2016, Lelia was offered the chance of two Clinical Trials – or standard treatment on the NHS.
She admits she struggled to decide what to do – but eventually joined the Clarity Trial - and in February 2017 she began treatment.
“At the point I needed treatment, I was offered three choices. I was told they were all reasonable options. Actually I found it difficult to be told to make that decision. I was still working at that time and Clinical Trials was my area. So choosing between two trials wasn’t something I’d thought through before.”
In the Clarity Trial, patients were initially given a dose of the targeted drug ibrutinib every day for two months. A daily dose of venetoclax, another targeted drug, was then added.
The venetoclax initially caused fatigue and a loss of concentration for Lelia but her condition went on to vastly improve.
“Initially, it was a two-year treatment period and I started in February 2017. At the end of my two years, I still hadn’t reached the end point of the study which was what they call minimal residual disease (MRD Negative). I was still positive.
While they were pleased with the results some people had, they were a bunch of us – me included – where we were improving, my bloods were still going down with every visit – but I hadn’t hit the magical point yet. I was one of those that extended the study for another year of treatment. I had a slight limbo period and then I had another year and I finished that in April 2000. I came off the venetoclax and now I’m on the ibrutinib.
Lelia in the Highlands in 2019
“It’s about maintaining. My haematology got a whole lot better and I am delighted I got my quality of life back. I think some people on the study have been able to stop their treatment completely. But I didn’t get to that point. I have stopped the venetoclax because I’ve done the maximum three years but I do still take three tablets in the morning of ibrutinib. But I’m technically in remission.”
It’s fair to say that due to her experience with Clinical Trials, she’s passionate about their importance.
“Clinical Trials are the only way they will ever find a cure for blood cancer. For me, I would say it’s been a really positive experience. If I was advising someone who was thinking of going on one I would say - ask all the questions you have lurking in the back of your mind.
If you don’t understand, ask again. And be careful who you ask. It’s like our news sources. Go to reliable sources that should give you reliable answers. Not just trawling the internet. I also, personally, think it’s a nice feeling to feel you are adding to the knowledge.”
How funds raised for Cure Leukaemia help save lives