Report Members Meeting Brentford December 2014

It was a privilege to be given the opportunity to kick off the day, with a welcome and provide news of CLLSA milestones and achievements of 2014. The Association, patient community and wider "CLL family" have achieved a great deal together during 2014. It was a pleasure to share this. Although a little nervous those that know me will be surprised I stayed on point and kept to time  . Hard with so much good news for us!! 

As it was an end of year event and celebration I’ll be unorthodox and provide a report as a thank you list:

  • Starting with thanking so many members for making the day such a success so close to Christmas.
  • Thank you to those that helped us prepare for the day and travelled early to help with set up. Sarah who managed all the registrations and ensured everyone who was able could attend. She also did so much preparation behind the scenes preparing the materials and arrangements for the day.
  • Thank you to the venue staff who worked with us through the night to ensure the facility met our needs and those timings, catering, servicing and the environment was so comfortable. 
  • Thank you to the team that joined us to film the keynote speaker- Dr Dearden's talks and also work as event photographers.
  • Thank you to the AV team who prepared such great audio visuals for everyone and ensured this was sequenced for the day in the different rooms.
  • Thank you the charities: Lymphoma & Lymphoma Research and Lymphoma Association for partnering with us and to their, information, patient support and education teams who joined us and provided so much information, literature, support and input, especially their contributions to discussion groups and breakout sessions.
  • Thank you to our 'key note' speaker Dr Claire Dearden Head of the Chronic Lymphocytic Leukaemia (CLL) Unit at The Royal Marsden for preparing and delivering two fantastic and current educational talks and providing us so many answers to so many questions.


Update on therapy of CLL "Living Longer Living Better": 

Dr Dearden had only just returned from the US where she was attending the American Haematology Society (ASH) meeting. She talked about the release of new developments in CLL treatment and care. Dr Dearden provided the most up to date of talks in very understandable and patient friendly language.  

These educational talks can be watched as videos accompanied with slides:


Watch update on therapy of CLL "Living Longer Living Better" part 1  


Topics covered: 

  • Chronic Lymphocytic Leukaemia overview introduction for patient/carers

  • The Clinical Course

  • Update on Therapy of CLL Outline

  • The Evolution of Treatment Options in CLL

  • Tailoring treatment for CLL patients

  • Fit Patients: FCR is the Gold Standard

  • CLL: A Curable Disease? IGVH mutated patients post-FCR

  • Improving on FCR 

  • CLL10 Study: FCR vs BR in Front Line 

  • Front-line chemo-immunotherapy- what is the value of MRD negative remission? 

  • FCR is the Gold Standard for CLL?

  • CLL: Consider age and fitness

  • CIRS score measures medical fitness

  • CLL patients are older and most have some co-morbidity

  • What is the Standard of care for older patients? Lack of evidence from trials

  • Slow-Go: Chlorambucil or Bendamustine

  • Trials for Frail Older CLL Patients 

  • CLL11: Progression Free Survival 

  • CLL 11: G-Chlorambucil gives superior PFS compared to R-Chlorambucil

  • CLL 11: Addition of GA101(Obinutuzumab) to Chlorambucil Improves Survival

  • Complement 1: Addition of Ofatumumab to Chlorambucil improves PFS 

  • UKCLL Slow-Go Trial: RIAltO (Randomised Investigation of Alternative Ofatumumab-based regimens)

  • Are genetic risk factors important?

  • CamPred compared with other regimens in previously untreated 17p- CLL

  • Quality of Life: Benefits of Therapy

  • Maintenance- is it worth it? Abstracts 0020 and 0021 

  • Management of Relapsed CLL

  • GCLLSG CLL8 Study

  • Refractory CLL


Watch update on  therapy of CLL "Living Longer Living Better" part 2 


  • Most recent update

  • ‘Ideal’ New Treatment for CLL

  • From Biology to Therapy in CLL

  • A Simplified BCR Signalling Pathway

  • Ibrutinib in Relapsed CLL

  • Common AEs (all grades) 

  • Pattern of response: blood lymphocytes vs lymph nodes

  • RESONATE Phase 3 Study Design

  • Progression-Free Survival

  • Overall Survival

  • Efficacy and Safety of Ibrutinib in Patients with Relapsed or Refractory Chronic 

  • Lymphocytic Leukaemia or Small Lymphocytic Leukaemia with 17p Deletion:

  • Results from the Phase II RESONATE-17 Trial

  • Ibrutinib: PFS in >65 y treatment naive

  • Ibrutinib + Rituximab: Phase 2 in High-Risk CLL 

  • NCRI FLAIR (CLL10) Trial

  • A Simplified BCR Signalling Pathway

  • A Phase 3, Randomised, Double-Blind, Placebo-Controlled Study Evaluating the Efficacy and Safety of Idelalisib and Rituximab for Previously Treated Patients with Chronic Lymphocytic Leukaemia (CLL) GILEAD-116

  • Gilead 116: Progression-Free and Overall Survival

  • PFS in patients with del(17p) or TP53mutation or del(11q)

  • Duvelisib (IPI-145), a PI3K-δ,γ Inhibitor, is Clinically Active in Patients with Relapsed/Refractory CLL

  • Phase I trial of ABT-199 (bcl-2 inhibitor) in relapsed/refractory CLL

  • Percentage change from baseline in lymphocyte count, nodal disease and BM infiltration

  • ABT-199 Monotherapy Phase I in CLL 

  • Targeted therapy for CLL The Issues

  • Targeting BCR in CLLUKCLL Trials Group: Phase III studies

  • Targeting BCR in CLLUKCLL Trials Group: Combination Feasibility studies (treatment naïve and relapsed)

  • Next Generation of CLL Therapies Future Implications

  • Conclusions


  • Thank you all volunteers who facilitated group discussions and everyone for sharing their stories, perspectives and lessons.

  • Thank you to the working group teams for preparing and leading break out group discussions and demos: Thank you Andy for his work during 2014 working tirelessly on the New CLLSA Website development and preparing for the group session with a demo from the test site and all those who joined me in the session updating about the evolving CLLSA quality of life study project and discussed moving forward to next steps.

  • Thank you to volunteers Hugh and new trustee Pauline who completed the day's programme with two talks sharing their personal journeys living with CLL through treatments, diagnosis and watch and wait, their perspectives and lessons . Hugh for coming to us from Scotland and to Pauline for lessons from how to navigate the health system and deal with some of the problems and challenges involved in testing processes.

  • Finally thank you to the event sponsors GSK who supported us with an unrestricted educational grant..


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