CLL SUPPORT ASSOCATION
20 July 2017
Stamford Court, University of Leicester,
Oadby, LE2 2LH
There were 4 presentations videoed at this meeting
Dr. Ben Kennedy a Consultant Hematologist at the Leicester Royal Infirmary started the meeting with a review of the IWCLL meeting held in New York May 2017. This talk covers a lot of new research and introduces new terminology. Olga Janssen, a CLLSA Trustee then talked about setting up and running a local support group.
The afternoon presentations were started by Brian Gardom Patient Advocate and CLLSA Trustee (in waiting) who talked about building good relationships with your GP and Consultant. This was followed by Gill talking about her journey with CLL since being diagnosed in 2012.
Reflections from International Workshop on CLL (IWCLL) and beyond.
Dr. Ben Kennedy
Dr Kennedy is Consultant Hematologist at the Leicester Royal Infirmary since 2001. His clinical practice includes CLL, Hodgkin and Non Hodgkin Lymphoma. He helps shape the future clinical trials in the uk as a member, and former secretary, of the CLL clinical trials subcomittee of the National Clinical Research Network (NCRN). Together with fellow hematologists in Europe, Ben Kennedy is studying communication problems between doctors and patients. Ben Kennedy was for many years secretary to the UK CLL Forum.
Ben starts off by confirming that CLL is a complex disease and a good example of Haematological malignancies and so provides a window into molecular mechanisms of disease. However interesting the science and the pictures are the disease does have a profound impact on peoples lives.
The basics are covered briefly. Progress being made as tests that were advanced a few years ago are now routine but it does not give the complete picture. Over the last few years it has become apparent that next generation sequencing will be required to better understand the sub clonal variation of cells in CLL. The significance of IGHV mutation status is covered and more complex than simply mutated or unmutated.
Ben then moved on to cover some of the research topics covered in the sessions like under the headings: TP53 gene, other significant genes and clonal evolution, IGHV sub clonal architecture and Novel therapeutic approaches. This section introduces a lot of new research and terminology that we are likely to hear more about over time but not likely to be in general use in clinics for many years.
The current version of the video does not have the slides embedded - these can be found in two ppt files at the bottom of the page.
Setting up and running a local support group.
Olga Janssen, Trustee
Olga talks about how important local CLL support groups can be in supporting the needs of the cll community locally. The needs of local groups are similar to that of the national organisation to educate and provide a space for patients and families living with cll to meet up for mutual support. Once up and running each group may develop their own character to address local needs and those of the participants. The CLLSA would like to know about all support groups being started or already running so members can be made aware. If you have questions about setting up or running a group then send an email to email@example.com and the CLLSA will endevour to get you an answer.
Building good relationships with your GP and Consultant
Brian Gardom Patient Advocate and Trustee
Brian discusses why it is so important to have a good relationship with the GP and the staff at the surgery and your Consultant and his medical team. This may involve educating your GP who may have seen very few if any cases of CLL. Recommends ensure the GP has access to all the telephone numbers of your hospital team. He gave an example of why this preparation was so important to his wife, living with CLL, when she fell ill.
A Patient’s story
Gill talks about her journey with CLL since being diagnosed in 2012. After many years on W&W things have changed recently. Many will find many aspects of her journey very familiar.