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.”