Dear CLL SA members,
I am delighted to be able to send David the slides from the presentation I gave to the UK CLL Forum on real-world use of ibrutinib. As you may know, this was a big project that I was keen to complete before I handed over the Chairmanship of the UK CLL Forum to my colleague from Oxford, Anna Schuh. This evaluation has now been accepted for publication and should be easy to find in the journal ‘haematologica’ when it goes on line, any day now. I am happy for these slides to be on your website, but please remember when looking through them that with any evaluation or audit that collects data after the event, there are always limitations. As I said when I presented the slides, we cannot be sure of the accuracy of particularly the adverse event (side effects) reporting, and we have not had the resources to actually check how accurate the data is. This is an inherent limitation of this type of study.
What we can see from the data is that around ¾ of all UK / Ireland patients who started ibrutinib for relapsed / refractory CLL are still taking the drug at one year. For this challenging group of patients, this is indeed remarkable. What we have also found is that patients who are less well when they start ibrutinb (referred to as ‘poorer performance status’), have around double the chance of being off the drug by 1 year compared with fitter patients. Looking back at the data with 16 months of follow-up it seems to suggest that patients who are dose reduced for a wide range of reasons do not appear to have a worse outcome, in contrast with those who have longer spells of interrupted therapy. However, this is not the same as saying that patients don’t need to receive the standard dose of ibrutinib! Only a properly conducted prospective clinical trial would be able to answer to this question.
So, I hope you find the slides and paper interesting, but pleaseremember that this is not a clinical trial, and the data have to be interpreted carefully. If anything strikes you as particularly relevant or important to your specific case, then please remember to discuss with your haematologist or specialist nurse before making changes to your treatment etc.
With best wishes to you all
Clinical Lead, Lymphoma / CLL Service
Department of Haematology | Box 234
Cambridge University Hospitals NHS Foundation Trust Addenbrooke's Hospital
Cambridge Biomedical Campus Hills Road
Cambridge CB2 0QQ