[TrigletParticipant]

Hi everyone. I've been reading, reading, and re-reading lots of the discussions and threads on here for a while now and must say that I've been encouraged and humbled by the amount of support that you've all shown. I hope now, that I've taken the plunge, I, will, at some stage, be able to give some words of encouragement and support back. I was diagnosed in 2006 (broken vertebrae the year before, but nothing picked up…)went through RT then CDT and finally STC in September 2007. A couple of infections post SCT that landed me back in my local hospital, plus a nasty bout of shingles 2 yrs ago that I am still feeling the effects of. Apart from that feeling fine.

I am being treated at Kings in London, who told me at my last appt that MM is relapsing and that I will probably require further treatment before the year is out. They mentioned the possibility of another STC, and I don't really know if I want that – but we'll have to wait and see. Sorry this 'intro' has gone on for a while. Rosie.

[tomParticipant]

Hi Rosie
Welcome to the Group, am sure you will be pleased you have made the "Plung" and wonder why you didn't do it before.

Keep strong and keep us posted in the treatment you are offered:-D

Love
Tom "Onwards and Upwards" xx

[CarolBradley1Participant]

Welcome Rosie
Wow! you sound as if you are a real seasoned campaigner – after going through so much I can understand how you might not want to go through another STC – not much fun I do agree.

Glad to hear your coping with everything in such a brave and positive way – you must have picked up lots of information and experience along the way.

Take care of yourself and I do hope that they have it wrong about the relapse.

Best wishes
Carol xxxx

[TrigletParticipant]

Thanks Tom – I'm shy Tom, I'm shy! It took me a long time to figure out what, if anything I could possibly say that would have been any help to anyone, as all the responses seemed to say it all.
Took me a while to realise that if I'd too, posted a reply, it might have helped someone,even if it was just repeating the same words of comfort and support. Finally come to the conclusion that I was being a bit selfish and must do something about it.

I will keep you posted as and when things start to happen treatment wise, thanks for replying, stay well Rosie x

[TrigletParticipant]

Hi Carol nice to hear from you! Don't know about a seasoned campaigner, I just did what the docs told me was best for me. I won't be so wimpish in the future. I have learned a lot more from this site and the experiences of others, since beginning to visit a couple of months ago. I wish I'd done it before, but better late than never eh?!

I'm sorry to hear that you are still have lot of joint pain. Is that MM or something unrelated? After my SCT, I felt that everything I caught, or felt, was down to MM, quite paranoid. But of course I've learnt to relax a bit, specially if I say to my hubby ' ooh my legs/back/arms/elbows teeth etc etc do ache',…he'll more often as not come back with,…. 'so do mine…!' You've got to laugh haven't you.

[andygParticipant]

Hi Rosie.
Welcome at last to the forum. I was diagnosed October 2011 so you've been on the MM journey a lot longer than me. I haven't had a sct yet as the medics are struggling to get my paraproteins down. I have been told sct can be quite difficult for some but not having been through it myself I can't offer an opinion on whether going for a second is worth the side effects. There are others on here who have been through 2 sct's who will be better placed to guide you. Good luck with whatever you decide and keep us posted.

Take care
Andy

[TrigletParticipant]

Thanks for the welcome Andy. I am kinda familiar with your journey so far….I have been lurking for a couple of months!?

One of the things my consultant and his team stressed to me when MM kicked off, was to try not to worry too much about the level of your paraproteins. Easy to say I know, 'cos don't know about you, but when I was first diagnosed I worried about everything. They told me that the level of pptns was only one aspect that they measured, and, that it wasn't nearly as accurate an indicator as some people might think.

I went to a 'information awayday' for MM sufferers down in sunny Bournemouth, well let's say my husband almost dragged me (I was in ostrich mode – sometimes I still am!). The speakers down there re-iterated what my medics had said about pptns, and I started to understand more clearly from then on.

We all have differing levels, and what's 'normal' for one person is not the same for others, yada yada yada…… you know the score. Please don't stress yourself out, over them. My pptns never went completely away before I had my SCT. I am sure that your team will get them to a level that they are happy with. And if they are higher than anyone else's… it's because your [b]special[/b], rejoice in that.
Rosie

[wendyduffieldParticipant]

Hi Rosie

Sorry to hear about your relapsing after 4 plus years, I had a stem cell transplant last September and dread each 3 monthly blood test but so far so good but way to go. You dont say how old you are and I dont like to ask but I guess it is relevant to your treatment options! You could ask your consultant at your next appointment what alternatives he could propose to another SCT and what remission you could expect to get out of a second SCT because I understood it was about half of the first one.

Keep posting
Wendy

[TrigletParticipant]

Hi Wendy, Thank you for replying, it's so kind of you, and it really does help.

I don't mind telling you my age – I'm 65 and I think you're absolutely right in what you say about age vs treatment options. When I had my SCT the upper age limit was lower, and as I have passed that, I just didn't consider it would be feasible this time around. I am going to ask projected outcomes as you suggest. I feel very lucky to have had so long post SCT, albeit 2 yrs with a maintainence regime of Thalidomide daily, I obviously want to achieve as much as possible this time.

I think we all dread the next check up and blood test,you are not alone – fear of the unknown I guess, and then so pleased when it's all over. Talk about adrenaline rushes. I'm glad that you seem to be doing good so far, and wish you well as you continue.

Thanks again
Rosie xx

[tomParticipant]

Hi Rosie

Shy ? you erm well I will wait for a few more posts before I answer that Lol.

And I think you are going to do a great job with advice and help just by looking at the few posts you have made so far 🙂

Keep up the good work Rosie

Love
Tom "Onwards and Upwards"
Ps am also Shy 😀 xx

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