London Members Conference 8 Nov 2018

CLL Support Association Conference

London

Thursday 8thNovember 2018

Victoria, 1 Drummond Gate Pimlico, London SW1V 2QQ

The Fourth of this years CLLSA conferences was held in the ETC venue in Pimlico for the second time in 3 years. 85 members enjoyed presentations by two expert speakers from Royal Marsden Hospital and UCLH. There was also the traditional member stories, this time delivered as a delightful double act. David Innes the association chair then gave an update on a successful year for the association and plans for the future while trustees ran a workshop to find out more about what members want and experience to help influence the associations strategy. We also had 32 people volunteer for the role profile raising champions role. The conference was deemed a great success! Enjoy the videos, read the slides and full conference report for more details. See you at one of the 6 conferences next year!

 

PROGRAMME


10.00 a.m.  Arrivals, refreshments, meet table companions

 

10.30 a.m.  Welcome and introduction to the day

 

Marc Auckland

10.40 a.m.  Members’ CLL stories

A patient’s and her friend’s perspective

Sue Cracknell &

Elizabeth Pearson

10.55 a.m.  CLL, Treatment now and in the future

Dr Dima El-Sharkawi is a Consultant Haematologist at the Royal Marsden Hospital with a special interest in CLL and lymphoid malignancies and haematology malignant diagnostics. Her clinical research interests focus on the translation of scientific advances into clinical practice, and she is an investigator on a number of clinical trials.

 

Dr Dima El-Sharkawi

12.40 p.m. Lunch

 

1.40 p.m. Update on CLL Support Association developments

 

David Innes –

Chair of CLLSA

2.00 p.m. CLL Support Association champions

Focus on Role Profile Raising Role and identifying volunteers

 

Roger Huxley

2.20 p.m. Me, my clinic and the CLL Support Association

Facilitated small discussion groups for sharing knowledge, experience and tips amongst members and beyond. Afternoon tea will be available.

 

Olga Janssen

3.15 p.m. CLL ‘Cure’?

Dr Jasani is a Consultant Haematologist at the Royal Free London and University College London Hospitals NHS trusts. His special interest is CLL and Lymphoma. He is a member of CLL clinic at UCLH. He is also a Principal investigator for various clinical trials for CLL.

 

Dr Parag Jasani

3.55 p.m. Conferences closes.

Conference reports and slides

 

Marc Auckland

 

Members Story

We opened the conference with a traditional ‘members CLL story'. Elizabeth Pearson and Susan Cracknell, members from the Isle of Wight gave a unique and personal account of their CLL experiences. Friends for 35 years, Elizabeth’s husband Lester had CLL and sadly died in January 2018. Lizzie shared the journey, errors and failings in local treatment. Susan, a CLL patient diagnosed in 2014, also shared some local treatment issues resulting in her decision to move to Royal Marsden where she feels ‘safe’. As a result of the local experiences in particular they are helping educate and support their local GPs and hospital re CLL and look to form an island CLL support group. They shared helpful tips culminating in playing Louis Armstrong song‘A wonderful world’ emphasizing the advice to be positive and enjoy life.

 

 

CLL Treatment, now and in the future

The keynote speaker at this Conference was Dr Dima El-Sharkawi. Dima explained where CLL come from, where it stands in the cancer rankings, how it is diagnosed and how the prognostic tests and markers indicate likely survival ratings. Dima then moved on to the rationale behind Watch and Wait, the evidence supporting this strategy, how health, fitness, stress and other factors can prolong the time until treatment is required. Dima then moved on to outlinedwhen treatment should start, options and goals of treatment, plus considerations that influence treatment options. FCR is still the gold standard though new drugs and treatments are being developed. Dima covered how the new drugs impact on the CLL pathways, current research and trial results particularly covering Ibrutinib and Venetoclax. Dima briefly covered newer therapies such as Immunotherapy, Idelasib and Car-T therapy. 

 

 

CLLSA Chair update

An update on CLLSA activity was presented by David Innes (Chair). David provided an update on UK CLL patient numbers, acknowledging they differed from Dima’s numbers. He announced the new Blood Alliance of twelve fellow blood related charities. This gave us more influence, illustrated by meetings with senior NHS England leaders to influence future cancer strategy and to ensure Blood cancers were seen as important as the more common ‘hard’ cancers. The Chairman also shared the recent CLLSA achievements and progress including Ibrutinib use. David shared the result of the recent CLLSA survey which is now influencing the refresh of the website and the drive for members to champion CLLSA in their encounters with healthcare professionals. Other initiatives are: new information packs, new look email-based news bulletin to members and the increase to 6 national member conference in 2019. David reminded all of the services currently on offer and the plan to increase fund raising to help finance the extra activity and member benefits. 

CLL 'cure'?

Our Second Expert Speaker was Dr Parag Jasani. Parag opened by asking: do people want a cure? What if the disease can be managed for your entire life? This led him into explaining Minimal Residual Disease (MRD)negativity, how it is measured, why it is important – because the deeper the remission, the longer the survival rate generally. He then moved to the treatment regimes over the past 50 years and what percentage resulted in MRD or equivalent. Parag then focused on latest clinical trials, new drugs and combinations both in the UK and the USA. These showed improved MRD results. Parag ended on Car-T therapy. BiTE (Bivalent antibody i.e. Blinatumumab) and Allogenic transplant but emphasised cost is an issue.