[RobertmauriceParticipant]

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 drug taking. For a long time I wondered if I had done the wrong thing and discussed it with the research nurse. She told me that evidence was beginning to show of unpleasant side effects from this treatment and vorinostat was no longer being recommended at my hospial, In the event, I began to relapse 18 months later and was sussessfully treated with bortezimib (Velcade)

[RobertmauriceParticipant]

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 of treatment , then an Sct and later on a second course of treatment I had a complete response, my paraproteins down to zero every time. Last November it climbed to 2 and my doctor was immediately concerned. In December it climbed to 8 and my consultant sprang into action. He told me that action is triggered if the rise in paraprotein is more than 5 in successive months. My kappa light chains also rose spectacularly from 47 in October to 250 in November to 870 in December. So this week I have started a new round of treatment after which he is recommending a second SCT. Anyway, you have my best wishes.

[RobertmauriceParticipant]

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 one week rest. This treatment began after my paraprotein had gone from xero to 8 in 2 months. After 4 cycles my paraproteinn had returned to zero. I was referred for another SCT. However, after discussion with the consultant at the SCT hospital I turned it down, I think rather against their wishes becauuse I was fit enough. This meant I had to continue with the Velcade for 2 more cycles even though it had already worked. Rond about the 4th cycle I began to suffer peripheral neuropathy (PN). This got so bad that at the end of the 5th cycle they ended the treatment. However, the PN continued to get worse for about another 2 months. My GP put me on Garapentin, which is the standard remedy. I also went to see a homeopath for a natural treatment. Eventually it began to improve and it is now completely gone. My latest blood results (last week) have shown signs of a possible relapse. This has come as no surprise as I was warned it would if I didn’t have that SCT but I don’t regret it. My next appointment is on Christmas Eve. My next treatment will probably be lenalidomide again And I am still eligible for that second SCT!
I think, Linda, that as you are a very fit, active person you will do well whwtever your treatment. Don’t be put off Velcade. It is a very good treatment and you may not get any PN. Eventually a new and similar drug, carfilzomib, should be licensed and that causes fewer side
effects.
Normally they don’t like you to break off your treatment for holidays. You can fit a few days break during the rest week perhaps. I actually got a 2 week break once and a three week break over last Christmas!

[RobertmauriceParticipant]

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 4th cycle and after the 5th cycle the pain was very severe, so I was taken off the treatment. That was 8 weeks ago but the pain has worsened. My doctor has prescribed gabapentin but said it would take some time to work. I find the best self-help treatments are massaging my feet (not easy),secondly and much better- lying on my back with my feet up the wall! I will try cocoa butter – thanks for the tip. Has anyone tried acupuncture?
Robert

[RobertmauriceParticipant]

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 collection treatment next Tuesday (29th). Am prepared for the worst, hoping and praying for the best re side effects, particularly mucotitis. Otherwise feeling really great. Just been out on my bike in hilly Peak District. I am 67.

[RobertmauriceParticipant]

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) I would probably have a stem cell transplant. I received 4 cycles induction treatment after which my paraprotein level fell to zero. I dont remember what it started out at but after 2 cycles it was 37, after the 3rd down to 11. I have just been attending Sheffield Hallamshire Hospital for the first stage of the Stem Cell Transplantation, the collection of stem cells. And now I must wait a few weeks for the High Dose Therapy (Melphalan) and the return of my stem cells. This is quite likely what your husband will get, if he is otherwise fit. I am 67 and towards the upper age range for this. Throughout the last 6 months the worst side effect was sleeplessness, just 2 hours a night for 4 months. This was the effect of the steroids. However it did not prevent me leading a normal life. Since February I have felt as fit as ever. I really hope and pray that your husband will be as positive as I have been able to be.
RobertB

[Author]

Posts