Bristol Members Conference 20 Jul 2018

CLL Support Association Conference – Bristol

Friday 20th July 2018

We the curious, One Millennium Square, Anchor Road, Harbourside, Bristol BS1 5DB

Programme

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

10.30 a.m. Welcome and introduction to the day Olga Janssen a CLLSA trustee

10.40 a.m. Members’ CLL stories Bert and Gail Wiegman.

A patient’s and partner’s experience of FCR treatment

10.55 a.m. CLL treatment – who needs treatment and Prof. Chris Fegan

How do we move from where we are to cure?

Prof. Chris Fegan is a consultant haematologist and Director of the School of Medicine at Cardiff University. He is Research and Development Director of the Cardiff and Vale University Health Board; at their recent conference he said: ” Innovation is a key driver as it creates new drugs, medicines and treatment for patient care…”

12.40 p.m. Lunch

1.40 p.m. CLL and the immune system Dr Stephen Man.

Dr Man is a Reader in the Division of Cancer and Genetics at Cardiff University. His research focuses on the role of the immune system in cancer. An expert on human T cells, for the past five years has been studying their role in leukaemia, with the aim of transferring findings for patient benefit.

2.20 p.m. CLL Support Association champions Roger Huxley Trustees’ plan for recruiting member volunteers.

2.40 p.m. Me, my clinic and the CLL Support Association Olga Janssen Facilitated small discussion groups for sharing knowledge, experience and tips amongst members and beyond. Afternoon tea will be available.

3.40 p.m. Update on CLL Support Association developments Olga Janssen

4.00 p.m. Conferences closes

 

 The highlight of the Bristol Conference Prof. Chris Fegan's presentation. "CLL treatment – who needs treatment and how do we move from where we are to cure?” He gave an up-to-date and wide-ranging account of treatments and their effectiveness. His message had a nice balance of realism and optimism, delivered with a touch of humour.  

The presentation was followed by an extended question and answer session asking for Prof. Fegan’s medical advice. This session was much appreciated by attendees. The edited slides and a full video of the presentation and Q&A session are available below.

Four alternative definitions of “cure” were offered: normal life expectancy, with or without treatment / with treatment and no side effects; complete eradication of CLL, never to return or never to return with treatments and no side effects. Prognosis is difficult. It is not known who will need treatment. We are already curing 80% of patients who have a mutated VH gene. Three quarters of CLL patients are men. Women are programmed to live longer than men due to their longer telomeres (sequences of DNA chains of code).

FCR therapy has been in existence for 10 years and can bring 10 years’ remission. New non-chemo therapies can improve survival and possibly cure CLL. Prof Fegan explained how these various new and expensive therapies work and are used in combination. 

The 'fitter' the patient, the better the chances of survival. Socio-economic factors have an impact. Diet, general health, not smoking and having support from the patient’s nuclear family, all this plays a part in improving a CLL patient’s outlook. 

The Conference had opened with a patient, Bert’s, and his partner, Gail’s, non-videoed account of their respective experience of FCR. It was emphasized that individual experience of FCR varies. Their focus on the treatment’s impact on everyday life and practical tips for coping was welcomed by members at the Conference.

In the afternoon, a colleague of Chris Fegan, Dr Stephen Man, gave a very accessible talk on CLL and the immune system, well illustrated with visual images and similes, to show how research can benefit patient treatment. Slides from the main speakers can be found at the end of this article.  

Small group discussions then focussed on sharing CLL experiences and tips. These followed a videoed presentation on recruiting Champions to promote the services of CLLSA in CLL clinics. We were pleased to recruit 25 volunteer Champions.

The Conference finished with a videoed update on CLL Support Association developments: our work with others to reverse NHS England’s ruling that patients who have three years’ remission from CLL would not be eligible for treatment with Ibrutinib; our Charitable Incorporated Organisation (CIO) status and impending election process for trustees; various fundraising initiatives by trustees and members and an invitation to all to assist with fundraising for the Association; an outline of the aims and a request to participate in the programme to makebloodcancervisible (MBCV), as part of Blood Cancer Awareness Month (BCAM) in September, in partnership with the pharmaceutical company, Janssen, and other blood cancer charities.

Our venue for the Conference was the spacious top floor of the museum “We the curious” in Millennium Square, central Bristol. It suited us well, being self -contained, with en-suite catering provision, generous terraces with lovely views, a good AV system and helpful staff.