[coastiParticipant]

Hi,

Thought I’d introduce myself here as I’ve read the forum in the past but have only posted recently. I was diagnosed MGUS 11 years ago with quite high PP but no symptoms.  Nothing changed for years, and I got to the point of largely forgetting about it and assuming I was going to be one of the lucky ones that don’t progress to MM.  I wasn’t and I was diagnosed with MM a year ago with a single plasmacytoma. I had CTD on the MyelomaXI trial and autoSCT just before Xmas last year.  Transplant went really well, I only had a few days of discomfort in hospital and I haven’t had any big issues since.

At the moment I’m waiting to get to day +100 and find out how successful it has been, and thinking about allogeneic transplant which I’ve been offered. It’s a big decision. The other option is Lenalidomide maintenance, not sure I want that.

Anyway, hello to all and thanks for your postings it really helps reading others experiences.

How do I get on the under 50’s forum?

Laura

[meganjaneParticipant]

Hi Laura,

Welcome to the forum, I am glad to read that you are recovering well from your SCT. My husband Phil was diagnosed with MM at the age of 43 in May 2012. His first line of treatment was on the PADIMAC trial which was to see if the use of Velcade could delay the need for a SCT. In Phil’s case his response to Velcade was not good enough to delay the transplant so he had his auto SCT in December 2013.

You have some interesting choices to make, Phil was not offered maintenance and he is happy to be off treatment at the moment but if it delayed a relapse with minimal side effects it would be a good thing, if only we all had a crystal ball 🙂

If you want to join the Under 50s forum you just need to email Scotty or Phil and they will send you a link. scotty@brandmojo.co.uk or phil.kelly2@btinternet.com

Megan

[Author]

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