Hello Kathleen

We can never win can we at the moment I am at least two stone over weight because of the steroids what ever I eat seems to put weight on me the season now is comfort food steamed puddings you can get induvidual ones dumplings stews with lots of beans and potatoes hot c:-) rumpets and butter all really fattening but I suppose…[Read more]

Hello Norman

I have had a monthly infusion of Parmidronate for the past 18 months the first few times caused a bit of bone ache in my legs but since then I have been fine only problem is I have deep veins so it takes two or three digs to find one
Keep well Jo

Hi Scott,

Welcome to the UK website….and yes I was down as hopefulmum…..don't like the title now (though of course I am hopeful!!) but I signed on as that when I was pretty depressed about my diagnosis and when all I'd read was the american titles!

A bit more upbeat now, despite having just started on CRD (via the Myeloma XI trial).…[Read more]

Hello Kathleen

so glad you made to this new site as for normal who is normal here
not many of us
Keep well Jo 😎

Hi everyone,

Thanks for the replies. Well, I'm on day one and like you said Norman (and it's great to find someone else on the same trial!)so far no side effects apart from feeling a bit dazed – but I think that is more to do with the fact I didn't sleep all last night (despite not having started the CRD!)!!

Anyway, I know it's early days,…[Read more]

Hi David,
Might be able to help you there. I used to be on talktalk and had the same problems. I think it is something to do with that your account is with talktalk to send emails, and since you can't get the internet access via them, you are unable to send emails. I don't quite get why you can receive them but I had the same thing!!! I never did…[Read more]

Thanks Bridget!
I'll ask the question tomorrow but I think you're right! And my other thought, is why are we all so worried about using the best treatment first…..surely it's better to use it up front and get the best quality of life earlier?? (actually, if I'm honest, that's my husbands thought, but I have to say I agree!)
Debs…

Hi Dai,
I did suggest to the webteam when I met them at the london infoday, that perhaps there should be an area of the site where people know that once they enter it the language might become a little bluer!!! Funnily enough, it doesn't look like they took me seriously!!
God forbid they ever take a look at the Under 50 site…they'd be…[Read more]

HELLO DIA
TRIED TO ANSWER YOU WITH A FEW ASTERIX WOULD NOT POST SO MIND YOUR P'S AND Q'S
kEEP well
Jo 😉

thank you Dia

I am a complete muffin where computers are concerned

Hope you are well
Love Jo:-S

Hello Gill
glad you have arrived we still are missing a few friends lets hope they get here soon
Jo x

Thank you

sorry for being a bit dim but I dont seem to able to bring one down any advise please, I hope you are well
Love Jo

ps JUST READ DIA POST i AM A BIT DIM XX

Hi Katie,
Not sure on the answer to that one, though I will ask on Tuesday. I'm not sure it would as I thought that it was more that you weren't allowed access to it (because of cost) until you'd tried other options. I also read something somewhere that suggested that if you stayed on revlimid for more than 2 years, celgene pay for the drugs? But…[Read more]

Hi Mari,
I think that basically I have a 50% chance of being given CRD or CTD as induction therapy, and then depending on how I respond, I may get velcade before transplant (if I don't get a full response) and then after transplant, I have a 50% chance of getting Revlamid as a maintenance drug, which has been shown to be really successful in…[Read more]

Hi Scotty!!

You're looking like you're in a very bad mood….so black!

Give me a shout if you want any help.
Debsx

Hi Kevin you have had a bad year lets hope its the last of it constipation is awful some one wrote on this site a few weeks ago about a home enima called Microalax have you tried that
Keep Well Jo

Hello John

glad you found the site have just managed to find it myself not good at adding the picture yet

Regards Jo

Hi there.
It is so hard isn't it to know whether you're getting the right treatment or not. I have been asymptomatic until recently and was worried in the same way as my paraprotein went up over 6 months or so from 32 to 45 which seemed high in comparison to lots of other people. Like Mike, I had no other end organ damage/ bone pain etc.

What…[Read more]