Report Brentford Members Meeting 2012

Report on the Middlesex Members

Meeting held on 14th September 2012

By Nick York



Special thanks to: Glaxo Smith Kline for hosting the event at their headquarters in Brentford, Middlesex

The speakers, Dr Samir Agrawal, Consultant Haemato-Oncologist, St Bartholomew’s Hospital/Queen Mary University of London

Timothy Farren - Clinical Scientist, PhD student Queen Mary University of London.

Macmillan and Rajiv Bhattacharjee (London MIC) for information provision; support and discussion facilitation.

Volunteer member facilitators and Chonette and Sarah for their organisation of the event.

It was good to meet and learn with others about CLL medicine and how we live with the disease.

The meeting was well attended allowing several discussion groups to fill tables discussing: recently diagnosed, watch and

wait, treatment with FCR, second line treatments, sources of information and being a carer. These were vigorous conversations and several tables seemed to find it hard to part for lunch.

Samir’s talk: “An overview of CLL – from diagnosis to treatment choices”. It was riveting and several commented that they wished he could have continued. He really has a special way of delivering such a complex talk in a manner that ensures we were all involved. It was very innovative and he was also very frank. I was very interested in Bart’s development work and the involvement of CD160 and IL-6 in their diagnostic and prognostic work ups.

This neatly led on to Timothy’s talk: “Minimal residual disease in CLL and Monoclonal B-cell Lymphocytosis”. A very interesting talk explaining his work with St Bartholomew’s. He explained lymphocytosis first, then, how improved testing for CD160 expression may be useful in the future. There was a lot of data and graph work but I think I understood. Here’s my attempt to further summarise his words.

CD160 is being used diagnostically for CLL at St Bartholomew’s. It is also being used to determine MRD status (Minimum Residual Disease levels following treatment, to measure how deep the remission is). They have discovered all CLL cells express CD160. They have created an alternative assay (test) that they say is potentially ten times more sensitive than the current assay to determine MRD levels. Furthermore, from a practical point of view, their assay is a simpler test, requiring fewer components to the test and less complicated data analysis, leading to reduced cost. Future research will need to investigate if MRD testing during treatment could guide the duration of therapy (ie, it could potentially be used to shorten treatment, reducing toxicity). Timothy also explained a trial using this testing method to test the Monoclonal B cell lymphocytosis (MBL) population to see if those few that progress to CLL can be detected even before clinical progression and if CD160 has a role in this. MBL looks like CLL and has the same or similar surface markers but is considered a benign disorder present in a percentage of the healthy general population.

This brought us to the end of a busy day and judging from the parting messages from everyone as they left it was a good day.

Introduction to a Doctoral Project about Living with CLL

Often invisible to the outside world, widely variable in prognostic outcomes, and currently considered incurable, a diagnosis with CLL demands constant negotiation between the concepts of “wellness” and “illness”. From my own diagnosis with the disease in 2011 it became clear that we CLL “patients” occupy a unique position at the crossroads of exciting advances in biomedical approaches to the disease, and communications technologies that allow us to share knowledge and experience. “In the Blood”, my doctoral project, explores an online support community as a “hub” of knowledge and support exchange. From complex medical research papers to individual accounts of living with the disease (and much in between), the project will document the various stories that come together in the online support community, enabling users to make collaborative sense of a chronic disease that shapes our lives.

Apart from identifying the key themes that occupy the lives of those living with (and around) CLL, IN THE BLOOD the project looks at the relationships between research, clinical, and patient perspectives in the dialogues of support communities. How are we translating and utilizing the advanced information at our fingertips?

How are we supporting and educating each other? How are we contributing to raising awareness of the disease?

What impact is this having on our relationships with our clinicians and carers? Through this approach I aim to show how biomedical research, clinical management, and popular cultural beliefs about what it means to live with cancer translate to everyday experience for those of us living with CLL.

I am really excited to have the opportunity of sharing my work in progress with you in Cardiff in January, and look forward to seeing you all there and hearing some of your own perspectives and experiences.

Julia Kennedy

Senior Lecturer

BA (Hons) Journalism

University College Falmouth