Hi Roz and Michael

Am pleased Michael is talking to some one now 😀
I also did have a good chat to a lady at Castle hill, it wasn't easy as bless her she made me cry :-S and i dont/didnt normaly do that:-/ but hey Roz do you know it worked for me? yes Elaine (my young bride) and i talk about our problem when the need pops its ugly head:'-(…[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 Kathleen

A warm Welcome to the New Gathering (gosh i sound like an American Evangelist lol)

And as for "Normal" I aint a clue what that is it certainly aint iccle ole me Ha ha, I know folk at work tell me they are "Normal"????!!! well looking at them am pleased I aint he he.

And yep this site is also Slow for me??

Love to all us…[Read more]

Hi Roz

Pleased you like the "Hugs" 🙂

As long as you get a bit of rest and spend some time for yourself you will be fine, I hope your Day goes Ok 😎

Cyber Hug" here

Love Tom xxx

Hi Roz and Michael

Am so pleased to read your last post Roz cos one thing comes through the words is that Michael's Nurse is now in MORE contact with you and that alone tells me through your post that you are a lot happier and I see you are getting your sense of humor back 😛 and that did make me laugh 😀 .

Lots of best wishes to you…[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 Roz and Michael

Am so pleased to hear Michael.s MM is getting better 🙂

Now its a case of tackling his infection, and am sure in time this will be done 🙂 its an uphill struggle for you both, but never ever blame yourself for putting Michael in the best place he needs to be at this time,I am hopping it wont be long before it starts to…[Read more]

Hi Roz

So Sorry to read you dint see the Consultant 🙁 am sure he/she could have put your mind at rest!

Is there No Dr that can phone you with the Information you need??

I know they are only "Cyber Hugs" so I hope they do you some good cos am sending you another big one ::WWwwwwhhhhhooooossshhhhh there you go you now have the One of…[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]

Oh Roz and Michael

How you have gone through an awful lot lately, and I do hope it gets better, I am one to say its not over till its over.

Keep strong and am sending you the biggest "Cyber Hug" I have ever sent Big WWwwoooooooSSSSsHHhhh am sure you will get that one its for Both of you xxxxxx

well al try it so it lol well it wont let me post lol 😀

Good Luck David
If it goes as well as mine you will sail through it, just take it nice and easy, no rush 🙂

Tom

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 Michelle

Oh am sorry your Mom Didn't come home, but am very pleased your mom got a day pass to see the "Ice Show" thats great news and am sure you all had a great day 🙂

Love and Hugs sent your way for you all

Tom xxx

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