Log in
CLL Support Association
10,985 members16,954 posts

Reflections from Cardiff, news of CLL research and the changing trials landscape

Reflections from Cardiff, news of CLL research and the changing trials landscape

Hi everyone

After reflecting on yesterday's Cardiff CLLSA patient meeting and the talks by leading UK clinical researchers and scientists. The developing new era of CLL medicine became real for me. Change is afoot, things are happening. There is good reason for the air of optimism and hope for the future.

Things sound so close you can almost touch them, but are they really that close? We are at somewhat of a cross roads, when exciting novel agents have to prove their efficacy and safety over time in a few before they can gain approval for the majority. To hear about so many showing real promise and requiring time is also very frustrating, . There are many hurdles still to overcome not least cost. However novel drug that have less toxic foot prints are now coming into trial in the UK . At first they will be trialled in the harder to treat groups, those with fewest options: the previously treated, refractory, elderly and less fit groups.

Watch this current news video, New, targeted oral medicines promise to revolutionise the treatment of chronic lymphocytic leukemia. From patientpower.info

Dr Claire Dearden , Consultant Haematologist and Head of the Chronic Lymphocytic Leukaemia (CLL) Unit at The Royal Marsden shows her excitement with these latest developments and discusses how they are now entering UK clinical trial for treating some with CLL.

There are many different types of approach to novel treatment that appear less toxic producing a lot of different novel drug leaving the bench and coming into trial. Listening to all the on-line chatter you may think it is only one or two. There are many a few are stealing the headlines at the moment but they will soon be joined by others. Understanding the complexities of different CLL types and the changing trial landscape available to clinicians to treat CLL does emphasise for the future how important it will be at treatment to have a consultant with a special interest in CLL on your team to best understand the ramifications and gain access to the agents in trial suitable for you. I will report later of yesterday’s talk by Professor Fegan about these new treatments in development and how things may unfold in the UK..

CURRENT - NCRN CLL Trials Portfolio Map: ncrndev.org.uk/downloads/Tr...

For me the caveat to all this is still our greatest companion; Time. Things may not move as fast as perhaps they should be able to. Younger fitter treatment naive patients will have to make do with what is available for the time being. Bendumustine a less toxic chemotherapeutic is being trialled with the next generation monoclonal antibody therapies to create a less toxic combination treatment option to FCR for this group in the not so long term.

We will have to wait to see what unfolds with a lot of time. If treatment is required to save our life we have effective options but will probably have to take the hit of toxicity to buy time if disease progression prevents us from holding out. Waiting and time seem unavoidable with CLL, and there are never any guarantees. However listening to yesterday’s Cardiff experts who are on the front line did leave me feeling more confident.

Without improved testing at diagnosis and at treatment then targeted therapies cannot be easily directed towards treating the individual patient. So it was so fascinating yesterday to listen to Dr Pepper’s take of prognostic testing , Handy that he could fall back on the study that his research group published last year. So his thoughts on the current state of play it’s real value was based on evidence. ncbi.nlm.nih.gov/pubmed/221...

Monitoring and graphing lymphocyte doubling time is one of the most reliable and cost effective independent prognosticators used in CLL management. It is the next generation of testing coming available by improved and more cost effective genome testing that will make a difference. Many novel pathways are being worked on that when combined with novel treatments may get us closer to the holy grail of individualised CLL medicine.

Chris Pepper's work with telomeres I found most interesting. That telomere lengths identify different prognosis of CLL patients. CLL patients have shorter telomeres and more progressive/aggressive CLL the shortest . This causes more to fuse together dislocating information that is clearly visible when a genome is sequenced. Fascinating. ( :

Extreme telomere erosion in ATM-mutated and 11q-deleted CLL patients is independent of disease stage.


Andrew Schorr at patient power has published a few more interviews from experts attending last year’s ASH conference who give their overview of the changing landscape .

Expert Perspective on CLL Treatment and Research Complexities and Obstacles .“Dr. Michael Keating, CLL researcher specialist at MD Anderson Cancer Center and President of the CLL Global Research Foundation, points out what he views as challenges in the expanding range of treatment options for CLL. In this interview, Dr. Keating also expresses dismay at the way many clinical trials are performed and how he feels this could potentially inhibit ongoing research and expanding knowledge to treat CLL.”


7 Replies

Thanks Nick for such speedy reporting.x


Great summary of where we are today Nick.

Interesting paper on what the best prognostic indicators are too. I'd be interested in how this differs for those with more of a SLL presentation, i.e. where the B-lymphocytes prefer to hide themselves away in the lymph system, marrow, spleen, etc., rather than in the blood. Obviously Lymphocyte Doubling Time won't work in early stages, but then again, I suspect that those presenting with SLL are much more likely to present in later stages as happened with me.

With the great increase of potential treatments (assuming many do get approved), identifying effective prognostic factors and then putting in place accessible and reliable testing procedures must become a priority so that SLL/CLL patients are given the most effective treatment at the most effective time. (On that latter point, I've observed that CLL researchers are starting to question whether earlier treatment with these new drugs may well be better than the current W&W as long as possible.)



The prognostics research study I noted was picked up by Chaya last year at CLL Topics.


when budgets are used up for providing treatments it was encouraging to know how reliable plotting the course of ALC is. . Are the other markers identified of more use with SLL? It was because .Large studies just produce averages that may not help the predictions for an individual and discordant cases also occur that this can't be taken as gospel I guess..

I think what I found interesting was that for individualised treatment to become a reality in the future both treatment capability and prognostic testing at diagnosis need to improve together. I believe that there is plenty in the tubes. But at the moment there is a disconnect, time is needed we are some way of yet

How is SLL currently identified early enough to enable localised radiation therapy that could be curative?

i have heard early use of the novel therapies in the UK discussed. True management of the disease commencing when there is little to knock back. Gaining ethical approval for trialing treatment of early CLL patients with novel therapies is difficult it will be difficult to gain sufficient numbers for a phase three trial. How many novel drug will be looking for a portion? it makes sense but when will it happen? .


Good summary. My first meeting and well worth attending even despite te long journey. If you are reading this and considering attending one of these meetings in the future i'd recommend it.

I'd read about the enthusiasm of those involved in the research and at the meeting i experienced it first hand. Thanks to the organisers and to those that made valuable time in their busy schedules to present to us and talk with us.



In what ways would Dr Michael Keating suggest making new drug trials less 'cumbersome and expensive'?


Hi Molly interesting question, any members know more about this?

In the UK the TAP initiative has been implemented to tackle some of this here., We were given a talk on this at the Midland meeting and also at the LLR Cardiff CLL Open Day in October. There is an update posted on the site reporting on:

TAP AND THE STRATEGY FOR UK LIFE SCIENCES: ONE YEAR ON following the release of the LLR news update in December cllsupport.healthunlocked.c...





From the LLR website:

"The Trials Acceleration Programme (TAP) is an exciting new initiative led by Leukaemia & Lymphoma Research to deliver more life-saving treatments to blood cancer patients through clinical trials.

By setting up a network of leading treatment centres around the UK, coordinated by a central hub, TAP will break down the barriers that exist in the UK in getting new treatments to blood cancer patients when they most need them.


Clinical trials test new drugs in patients and are vital for moving breakthroughs made in the lab into new drugs, diagnostic tools and other treatments that improve survival and quality of life.

Despite the fact that research continues to yield promising new treatments it is often not possible to test these in clinical trials and potentially life-saving drugs are left to sit on the shelf.


We want to change the way clinical trials are run in the UK so more patients have access to life-saving treatments.

Currently only 6% of blood cancer patients have access to clinical trials, compared with 19% for patients with other types of cancer. This means that blood cancer patients in the UK are missing out on access to new drugs and treatments.


Clinical trials in the UK, particularly in blood cancer are difficult to set up and slow to deliver results. Currently it can take anything from four to ten years to complete a trial and analyse the results.

This is for a variety of reasons; the main issues being a lack of staff resources in hospitals to manage the trial paperwork and additional patient care. The other major issue is getting new protocols off the ground, which involves a lot of bureaucracy.

Another important issue is that blood cancers, taken as individual diseases are rare. It is therefore difficult for a single hospital to recruit enough patients onto a trial that has very specific requirements and so some trials are never completed.


Before new drugs can be licensed and new treatment protocols accepted they need to go through a series of phased clinical trials. Early phase trials (I and II) that test the safety and effectiveness of very new treatments are the most difficult to set up.

A lack of early phase trials is causing a bottleneck that prevents new treatments getting to blood cancer patients, when they most need them.


We have selected 13 treatment centres around the UK; coordinated by a central hub in Birmingham to set up more blood cancer clinical trials, quicker than ever before.

TAP will see blood cancer clinical trials being completed within two years; the extensive paper work and bureaucracy surrounding clinical trials mean that currently these can take anything up to ten years to complete.

We have invested £1.3 million into a central hub - an expert team of scientists skilled at setting up clinical trials - to ensure that new trials open at each of the 13 treatment centres, simultaneously. This will increase the catchment area meaning that each trial meets its recruitment target more efficiently, the results are delivered faster, and patients have access to new treatments - where ever they live in the UK.

We have invested a further £1 million to ensure that each TAP centre has a dedicated research nurse and data manager to look after patients on our trials and get the results processed more quickly, benefiting patients in the future.


TAP was launched in 2011 and now has nine trials being set up to recruit patients. We are proud to have this initiative in place in such a short time-frame and have since been in talks with the government who are watching closely as they recognise that this model is an excellent framework for running trials in other diseases too.

In the next couple of years we hope to invest further funds to open even more trials and treatment centres within the TAP network to further increase our reach to blood cancer patients.


Pharmaceutical companies have shown a great interest in TAP as they can see the benefit of a streamlined trials network for the development and testing of new drugs.

We plan to nurture this relationship and deliver potentially life-saving new blood cancer drugs that can be tested in patients, at little cost to the charity and the NHS.

This initiative has long-term benefits to the UK industry and the potential for creating hundreds, or even thousands, of new jobs."


Well worth the effort to attend and gives us something to watch and wait for


You may also like...