One layman CLL Support Association member's view of the day (my view that is). Not reviewed by anyone - clearly opinion, all mistakes are mine and mine alone. (Disclaimer over)
A nice meeting location at the Grand Central Hotel, with good space (i.e. not cramped) a well thought out and easy location to find and if you came by train a good one minute’s walk (the long way). Reception was excellent (as always), catering was spot on.
The day consisted of:
1: Discussion groups: normal round tables, a chance to meet others, I especially like this being first, I can't remember if it has been first before. Some nice interactions on our table.
2: Dr Alison McCaig: talk on basics of CLL and living with it & current treatments. I've seen the first part of this or similar five times now and it never fails to surprise me, each time I hear an expert talking I pick up some new facts and yet again several dots were joined for me and my knowledge moved forwards. My how complex a single Lymphocyte is, let alone a whole human. Alison said she'd used standard materials she got off the internet but what is said is really important.
3: Three patients gave their stories: This is interesting because there is no theory, they like most of us have no medical training so speaking in the first person brings a very real and immediate human aspect to what they are saying. Each one was significantly different and all three excellent in their own personal ways. (Sorry, but I'm just not going to bike 400 miles a week!) I wish them all well.
<I did not make a note of the order of the next three>
4: Donna Kelly: Talked about the support provided and what to expect of the support team if you enter a trial.
5: Dr Emilio Cosimo: A researcher, discussed some work he was doing. Now, this was hard to grasp at first due to the technical content. However, it was fascinating once a light bulb clicked in my head. I sought Emilio out after the session and replayed my summary to him to check. This is a non-technical summary of what I think I heard, excuse the misuse of words.
a: Most drugs address apoptosis (programmed cell death) by some means or other.
b: His testing of a 'drug' did not seem to have this effect.
c: After a lot of work what he discovered is it seems to inhibit cell replication.
<opinion - mine> That means you could one day potentially slow down or stop CLL cells multiplying. Which means you might need less of other drugs that tackle apoptosis.
<opinion - mine> I found this really interesting and quite exciting
6: Dr Alison McCaig: Discussed the treatment landscape, that is the new novel treatments that are now just starting to arrive.
7: Q&A: Several questions answered on behalf of CLLSA by Arthur and others by Dr Alison McCaig
I do not believe anything was recorded, however, I believe that Dr McCaig is sending though her presentations once she has checked the acknowledgements on them are complete.
Once again, thank you to Dr McCaig, Dr Cosimo and Donna Kelly for their presentations and to the three patients, thank you for sharing. The final test: with hindsight was this worth the round trip from Buxton - YES, without a shadow of a doubt.
Anonymous CLLSA member and volunteer