[lynnesParticipant]

can anyone tell me what length of remission one can hope for if given chemo as the only treatment option?

[louishenryParticipant]

Hi Lynne, to give you a very unhelpful but probably accurate answer, myeloma is such an individual disease that anything from zero to six years or more is very possible. Certainly on average the remission after a stem cell transplant is longer than after just chemo, but there are many many exceptions. If your medical team don’t think a transplant is suitable for you it could do more harm than good. I always ask for lots of detail from the doctors but I don’t think I have ever gone against their advice.

 

[avantrompParticipant]

Hallo Lynne
I was diagnosed over 7 years ago. I had no sct and was put onto Revlimid and never achieved remission. My MM markers are still very low and I have had no other treatment than Revlimid. Try to be positive about your prospects because, as Louis says, everyone responds differently to treatment.
Annette

[lynnesParticipant]

Thank you both for taking the time to reassure me.  I am not confident enough to do anything other than I am told at this frightening time, although I am trying to gather as much information as I can.  The more I know the less scared I might be!

Annette, is Revlimid easily prescribed in the UK?  Reading up on it, it seems that it is prescribed when other treatments have been tried?

[avantrompParticipant]

Hallo Lynne
I didn’t want to go into a long story about my history. (I don’t have a problem with talking about it but it takes up so much space.} I live in the Netherlands and when I was diagnosed I entered a trial (Hovon 87) aimed at testing the difference between thalidomide and lenalidomide (Revlimid) for newly diagnosed patients not eligible for sct. The trial is long over and a report published. I am still sitting in the trial because I am still within its parameters. However the result of the trial showed that there is no difference in outcome whether you take thalidomide or Revlimid but a significant less chance of neuropathic side effects with Revlimid. I have written the above from memory so I hope that what I have said is all correct.
Contact me if there is anything else you would like to know.
Annette

[lynnesParticipant]

Thank you Annette.  I thought I had read on one of your posts that you lived in The Netherlands.   I am not sure of the availability of Revlimid in the UK but have arranged for a second opinion over here next week with a leading myeloma specialist to try to get my head around all the options.  At the moment I feel as if I am an onlooker, that this is someone else’s nightmare and that I will wake up soon!
Best wishes
Lynne

[Author]

Posts