Thanks Chris. Sounds familiar. I too was reduced to 5mg after about 3 years or so.

No, we don’t have one for North Yorkshire. I produce a monthly e-newsletter and reminder of up-coming meeting but most of the group don’t use email let alone Facebook.

Tina
Yes I am a fellow MyelomaXI trial it's now in remission. I was randomised onto a different maintenance treatment to yourself though. As well as 10mg dose of Revlimid I also get vorinostat too. 3 cycles so far and my only side effect is itchy skin but I have had this since the SCT last year so not sure what specifically causes it. The medics…[Read more]

Lesley,
I can't speak for everyone but the Myeloma XI trial is certainly working for me. I was diagnosed just over a year ago, had 6 cycles of RCD by which time there was virtually no sign of myeloma any more, had my SCT in July 2012 and am now in complete remission but taking maintenance treatment, again as part of the trial, with the view to…[Read more]

Great news Helen, I too had Professor Jackson for my SCT at the Freeman this summer so it looks like he knows what he's doing! We've got all the family arriving for Christmas tomorrow. Slightly different mood from last year's gathering. I was diagnosed a few weeks before last Christmas but now I'm in full remission. I've even got more hair now…[Read more]

Hi Babs
Day 19 and no adverse side-effects yet. Perhaps you were just unlucky and your next cycle will be better.
Graham

Hi Christine and Chris
I too suffer from PN at times but not as severe as in your case. Apart from keeping myself hydrated (as if we don't have to drink enough!) my hospital also offer Complementary Therapeutic Services such as massages and acupuncture into my feet, legs and hands. It works for me!
Graham

Babs
Sorry to hear you are suffering side-effects. I too am on Revlimid and Vorinostat, everything okay at the moment but I am only on day 5 of my maintenance regime so just a couple of weeks behind you. Handy to know someone on the same treatment plan and at a similar stage though, I'll let you know if and when owt goes wrong with me.
Graham