Hi Angela
I was on the Myeloma X1 trial and was randomised to the RCD induction treatment which was followed by an SCT. After this I was randomised to the lenalidomide/vorinastat maintenance regimen. However After thinking long and hard I decided against taking it and so I was removed from the trial. My basic reason was that I wanted to be free of…[Read more]

Hi hes042
I don’t think you have anything to worry about. The stability of the paraprotein level is much more important than the actual level. I met someone recently whose level had been around 20 for 10 years and the doctors were not going to do anything about it until it reached 30. My own case is entirely different. After both my first course…[Read more]

Hi Linda
I was dagnosed with myeloma in Sept 2011. I had 4 cycles of RCD ( lenalidomide) on the Myeloma X1 Trial. My paraprotein reduced from 69 to zero. In May 2012 I had a SCT. After a long recovery my remission lasted till October 2013. I was put onto Velcade and Dexamephazone. Each treatment cycle was twice a week (injections) for 2 weeks and…[Read more]

Following my first relapse I began a course of Velcade and Dexemethasone. After 3 cycles I was in complete remission and was offered a second SCT. I turned this down when I was told my remission would probably last only 12 months. I think I have an aggressive form of MM. So I carried on with the Velcade. The neuropathy in my feet started after the…[Read more]

Hello Jacqui
This is my first attempt at writing to the site I was diagnosed with MM in October last year. My paraprotein level reduced to zero after 4 cycles. I am on the Myeloma X1 trial which uses Revlamid instead of thalidomide. I also went in for Analagous Stem Cell Transplantation and had the collection in mid-April. I am starting the…[Read more]

Hi Ann. I was diagnosed with myeloma last October with the same symptom of upper back pain, nothing else. I have always been very fit, but ,funnily enough the diagnosis did not come as a shock and did not cause me any distress. Right from the start my consultant told me that after induction treatment (Revlamid And Cyclophosomde and Dexomephasone)…[Read more]