Hi Debs
My first time of writing, dragged out of the woodwork by your mention of the trial! My mum is recently (Aug Bank Hol) diagnosed and was also invited to join the trial. We looked at it pretty much as you did – it can't be a bad thing to potentially have access to these drugs (though the randomisation can be annoying as you still don't definitely get them!)at early stage. There is also some evidence to show that patients on trials can respond very positively, not just because they may have extra/different treatments, but also because they can be monitored more (for the docs curiosity, if not entirely altruistic!)and also apparently there are some phycological benefits, which aid recovery. She was (it seems) lucky to get the Revlamid also, even though she doesn't like them very much (I gather they knock you out a bit!)and we are now on 4th cycle so we will see how we fare. First reports have seemed good though, and most of her issues are with bone pain rather than side effects of the treatment itself.
I don't know if you have been to one, but my sister and I attended the London Info Day, and the Revlamid came up again and again as a good drug, and one which people seemed to want to be made commonly available. The Velcade is also a bonus, but I am hoping that won't be needed (for either of you!) and we can skip onto an SCT and big remissions please!
Just out of interest, where are you being treated?
Lindsey x
