Hi everyone,
Well I promised a summary and I'm not sure that I'm going to do very well so sorry up front!!
It was a great day, really well organised and I found it really useful for all those personal reasons you can't really put into writing. It was hard listening to people talk about side effects etc given that I'm probably quite close to starting treatment, but on the otherhand it was great to see so many people there on and off treatment, but doing pretty darn well!!!
It started with Dr Faith Davies giving a great talk on what myeloma is and how it affects people….fantastic for people like my sister who don't know too much and are a bit scared of looking it up on the internet. And actually I learnt quite a bit too!
Then there was Dr Sagar Lonial from Atlanta…I found him a bit hard to get my head round a lot of what he was saying, but after a following talk from Prof Gareth Morgan, it became clear that perhaps with the exception of Little Rock, that actually we are all starting to sing from the same sort of hymn sheet. The only difference sometimes being the manner in which we obtain the drugs. There was a lot of jargon going on with Dr Lonial's talk but I think again, that is because I haven't started treatment so am not so clear on what a lot of it means in UK terms, let alone USA terms.
There do seem to be lots of drug combinations coming out of the trials and it looks like it might not be too much longer before we see the trials in the UK.
There were a few other sessions, that I won't go into but were really useful from a personal perspective.
A few key things that came out that might be useful to someone??
1. Some data is starting to come out of Spain suggesting that if you treat asymptomatic myeloma early, you might delay time before full MM develops. However, it was only a trial of 80 patients and whilst they're looking at more trials, it is still early days.
2. Velcade patients shouldn't be taking green tea/ Vit C in excess. (No comment of what excess was?)
3. Flu jab/ swine flu should be fine so long as no additional factors other than MM to take into account. But if you're really ill, and it might affect your quality of life, might not be worth the risk.
4. Carfilzomib (is that right?) and Pomcelidomide (??!!) result in less neuropathy than velcade. If you are suffering peripheral neuropathy, esp with velcade, someone should be looking at giving you treatment break/ lowering your dose asap before it gets too bad.
Please note that if you think any of this affects you, please check with the MMUK team that I have got my facts straight!!! Would hate to give anyone incorrect info!
Sorry this isn't very technical but I spent a lot of the time trying to get my head round what they were saying and didn't always write notes!!
Thanks to the whole MMUK for a really professional and informative day though….would definitely recommend it and would personally go again, esp if my situation develops before next year.
Debs x
