Hi there.
Just wanted to say that I hope the mouth feels better soon and that your happiness levels go back up for you!

It's been great reading your blog postings…what a good way to do it for everyone.

Keep your chin up and you'll hopefully be out of there in the next week 🙂
Love
Debs x

Hi Scott,

Interesting to hear about your figures, though obviously I'm sorry to hear they've progressed a bit. But if it helps, I had a couple of blips like that and then things went back to normal again, before I started to show a steady deterioration in figures. So it's definitely worth watching for a month or so before you make any bg…[Read more]

Hi Lindsey,
I feel very much the same as you about the trial….don't think it can be a bad thing at all, and hopefully I'll avoid the velcade option as I'd rather go straight to transplant and just get on with it all.

Like your mum, I'm having limited side effects and am just really tired (but I always am with 2 little kids!). It was great to…[Read more]

Well, I thought I'd do a quick update in case anyone else is going on the Myeloma XI trial.
I'm now on day 5, so have had 4 days on dex and 1 day off, and still seem to be doing pretty well! I know it is early days….as Nick keeps telling me, we've got over 100 to go, but you have to take what you're given don't you!
I think I can sum up so…[Read more]

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]

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]

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 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]

Am slightly worried that I spotted this one straightaway Gaye….what does that say about me???!!!

Thank you to one and all!
Gaye, please don't ever apologise about giving advice on the under 50 title….I wasn't really sure where to post this one, and to be honest age is irrelevant isn't it. Not always, but definitely on the treatment side!!!

It is good to hear about the fact that a number of people didn't get side effects.

We told the…[Read more]

If possible, I think it would be good to see the latest posts without having to go into each category. Otherwise someone might not look at the treatment section who is Under 50 and visa versa. It becomes a bit of a hassle having to go into each one to see if there are any relevant posts.

Do you know when you will transfer the old posts over?…[Read more]

Hi Michelle
Sorry to hear that your mum hasn't been well and is back in…..at least she's in hospital now and I hope that they get on top of everything pretty fast.
All the best
Debs

Hi everyone,
Well I promised a summary and I'm not sure that I'm going to do very well so sorry up front!!
It was a great day, really well organised and I found it really useful for all those personal reasons you can't really put into writing. It was hard listening to people talk about side effects etc given that I'm probably quite close to…[Read more]