[GinaHParticipant]

Thanks so much for taking the time to reply.
Following four wonderful years in remission after her first SCT my Mam has had Thalidomide, velcade, revlamid and dex, but unfortunately nothing seemed to touch the myeloma. Her consultant says until they can get her light chain count down and stabilised a second SCT is not an option which is frustrating and she is so strong and amazingly brave.
Thanks again xx

[GinaHParticipant]

Thanks so much for all the support, advice and information. It's nice to know we are not alone. It is soooo useful to know there is a nurse we can contact as, and I don't mean to complain, we have never been given treatment 'options'. We have been told what is going to happen next without explanation (on average our appointments last 2 minutes- seriously!).
At the beginning of November 2011 my Mam was told no more treatment options were available and that she may or may not see Christmas – miraculously she went from strength to strength on steroids alone. The steroids stopped suppressing the myeloma Nov 2012 and I think we were just so grateful that they were prepared to try something else… but I guess it's time to start questioning!
I apologise for rambling, but this is the first time in 8 long years I've found people 'in the know' to talk to.
Thank you x

[GinaHParticipant]

Hi Trish
Thanks for your reply. I'm sorry to hear about your husband's relapse and I wish him luck for biopsy. Most of what I have read mentions Melphalan before SCT. I guess as a smaller dose it can be used as a treatment?

Thanks x

[GinaHParticipant]

Hi Foxley,
Thanks for your reply. It's reassuring to hear others have had this treatment because as far as I can tell it doesn't appear to be widely used anymore. I hope the results were also positive for you. I just find it worrying that it seems such a potent, and harmful, drug and that it is being used after so many years of damaging treatment. I guess I was just wondering why. Does it mean they are running out of options??? Did you take it before a SCT? My Mam does have stem cells left in storage but docs don't see her as suitable for a second transplant.
Thanks again for replying x

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