Brief overview of patient meeting at Bart's Meeting in London
The meeting started with picking up our name badges before ascending the grand staircase past the large paintings on the walls, painted by William Hogarth, and then on into the Great Hall for a coffee and chat as people arrived.
The Grand Staircase left , photo thank to the Friends of the Great Hall
The meeting was attended by Bloodwise, Lymphoma, Lymphoma Care and MacMillan. They all had many useful booklets available on CLL as well as living with cancer, watch and wait, treatment choice and even a recipe book for those with cancer.
The formal day was started by David Innes who introduced the day and covered the usual house keeping issues. He reminded us that there was no charge for attending the meeting but they were supported by donations, fundraising and grants. Envelopes were provided for donations and can always be made through Donate on the website at any time. Mention was made of ongoing work to update the stated aims of the charity.
The first talk was by Professor John Gribben. The talk was well balanced giving plenty of information through useful slides which are available below.
The points I took away from the talk hopefully correctly were:
Trial until recently have been limited to a cohort of patients that are not representative of the general population of CLL patients. This is changing in the most recent trials.
The gold standard treatment is still FCR and this is currently leading to some very long remissions and minimal residual disease the outcome we are all after. Unfortunately not everyone is 'fit' enough to tolerate this treatment. Fitness is measured using the Cumulative Illness Rating Scale, CIRS. This takes into account various conditions we may have that might affect the bodies ability to cope with chemotherapy, heart disease, kidney issues etc.
The new treatments being tested show great promise on there own and are now being tested in new combinations. On there own they keep the disease at bay but need to be taken continuously and always leave some residual disease. There is evidence coming from trials that some combinations are giving similar good results whatever the 17p presentation – mutated/unmutated. It is hoped that in combinations that better minimal residual disease can be achieved and ultimately treatment stopped but this all needs testing in trials. This may allow the new, expensive medication to be used for shorter periods and so be more affordable.
The published survival information is historic so may not be relevant to current patients. The new treatments being effective but less aggressive make treatment later in life more tolerated. After a brief Q&A Prof Gribben had to rush back to his clinic.
Dr Samir Agrawal, a trustee of the CLLSA, and Katie Miles nurse specialist discussed the progress made in the 'remote Patient Monitoring Program' rPMP. This program involves patients who are stable, whether on W&W or post treatment having their bloods taken at their local surgery or hospital and which is then sent by post for analysis and review at St Bart's. The follow up 'appointment ' can be done at mutually agreed times over skype or facetime for example and letters sent to you, consultant and GP immediately at the end of the review. Should the patients situation change then they will visit the clinic until deemed stable again.
The patients will have access to their accumulating records at any time through a secure portal.
The intention of the program is to make the frequent blood tests less onerous, avoiding travel and the inevitable delays attending a clinic at the hospital when not required to do so. This will allow the clinical staff to follow up their patients efficiently and reduce the pressure on the clinics. Currently they have 100 patients being monitored through the program with very positive feed back.
The morning talks came to and end and everyone circulated while eating a buffet lunch.
The afternoon began with a brief introduction to the history of St Bart's by Dr Samir Agrawal. Then three very brave St Bart's patients describe their journey through diagnoses, treatment and beyond. Three examples of individuals living well with cll.
After a break for tea or coffee Dr Samir Agrawal answered several questions from the floor. Topics ranging over the need for bone marrow biopsy and whether you can have an anaesthetic for them, value of supplements and many more. David Innes then wrapped up the day.
This overview has also been posted to the CLLSA on HeathUnlocked- If you attended the meeting please leave your comments on the meeting HU thread here as you may have taken away other relevant information from the various talks.