Beating chronic lymphocytic leukaemia

Updated 21 Feb 2018

CLL stands for chronic lymphocytic leukaemia. CLL is the most common leukaemia in the UK. Around 4,000 people are diagnosed with it every year in the UK (that's 11 per day) and 1,000 people die each year from the disease.

For years CLL has been a forgotten, ‘Cinderella’ cancer and not much research was going on into better treatments. But we knew this needed to change.

People’s quality of life suffers with CLL in particular, because large number of patients are on what we call ‘watch and wait’. This is where they don’t need treatment immediately but are monitored by their healthcare team, who look for signs that their CLL is getting worse. Many people tell us they call it ‘watch and worry’.

But the good news is that there’s a big buzz around CLL right now, because we’ve made remarkable headway in the last five years in terms of understanding how CLL works. We’ve learnt from our success with chronic myeloid leukaemia (CML), where patients can now take a daily pill each day and – for the most part – get on with their lives.

If we do the right things right now, and we see a big influx of money into CLL research, we think we’ll be able to do the same for people with CLL. Can you imagine saying you helped to effectively cure the UK’s most common type of leukaemia? Soon you could be able to.

“There’s been remarkable headway in the last five years in terms of understanding how this disease works.”

Professor Chris Pepper
Institute of Cancer & Genetics, Cardiff University





Potentially life-saving new drugs exist, now we need to find out how to use them

There are some very promising magic bullet drugs that could effectively 'cure' most patients of their CLL. We need to know how to use them, and that means that the context of CLL research in the UK needs to change.

It’s no longer about just investing all of our money into biological research that we hope will lead to new treatments. It’s about finding out which of the new drugs we have are best and how to combine them, to bring the best outcome for each individual patient. We also need to do all we can in giving patients access to the most effective drugs

To find this out, we need to develop better infrastructure: a national level trials portfolio for CLL, much like our Trials Acceleration Programme. We need to get these drugs tested and fast, if we want people living with CLL in the UK to benefit from them.

Developing second generation drugs, so we can cure EVERY patient

We do still need to do some biological research though: these new drugs won’t save every patient.

With CML, we’ve been able to develop a relatively small number of new drugs that effectively manage the disease in a large majority of patients. But CLL is a different type of disease: it’s less homogenous, the biological triggers that cause it in each person are more varied. So it’s likely that we’ll need lots of different ‘magic bullet’ pills, that are individual to almost each patient’s disease.

As a first step, we need to bank tissue from patients taking part in the new trials we need to run. This will help us understand why some patients don’t respond to the drugs we have, or why some patients become resistant to them and relapse. In turn, this will help us develop newer generation drugs to treat these patients.

Turning ‘watch-and-wait’ into ‘watch-and-live’

Kate Giles, who has CLL, smiling with her son Dan and dog

We want to get to a place where we can tell patients, at the time they’re diagnosed, if their CLL will ever need treating. While it’ll be hard for patients to know they have a cancer which needs treatment in the future, many patients have told us that this certainty will help them get on and live their lives until that time comes. And for some patients, they’ll know that their CLL will never develop to an extent that they need to worry about it.

We’re hugely excited about a research project we’ve just funded, which we think can help us get to that place. Duncan Baird, one of our researchers at Cardiff University has developed a genetic test that's designed to predict, at diagnosis, whether people will need treatment or not. His ‘telomere’ test has brought good, accurate results so far but what he and his team needs to do now is test it in real life – in a clinic, on larger numbers of patients. Our funding will allow him to do that – and possibly put an end to watch-and-wait for people with CLL.

Let’s turn ‘watch-and-wait’ into ‘watch-and-live’.

Hear from Kate, who has a type of CLL, about the impact its had on her life and how were supporting her throughout her cancer experience.