Hi Charlie,

I think everyone has pretty much covered things and I even wondered about not replying! But I thought I would say good luck with the Myeloma XI trial and tell you how well it has worked for me.
I got randomised to revlimid and had 4 cycles of that which brought my pp levels from 50 down to 28 – then I plateau'd. I was gutted. I…[Read more]

Good luck with it Nicola!!!

I know how hard it is to organise these things so well done to you for doing it and I hope that you raise loads and have a great time at the same time.

Debs x

Dear Gill,

I am really sorry that you are reaching this difficult time for you and Stephen. Like Tina has said, I hope that you are able to make the most of every minute with him (and that the short temper isn't too horrendous).

Thinking of you
Debs xx

Good luck ANdy….really hope you get some answers and a good plan for you.

Will keep an eye out on fb for how it goes!

x

Chris, that is amazing news and like the others say, thank you so much for sharing your great story.
I don't think any of us find it easy to think that we have 20 years ahead of us….I try to be positive, but at the back of my mind is that it is very unlikely. But stories like yours are so important for us to hear so that we start to REALLY…[Read more]

Hi Ian,

I used curcumin when I was smouldering. I used Doctors Best (think with bioperine) and built it up using the protocol Margaret suggested (otherwise you end up on the loo every 5 minutes! Takes some time for your body to get used to it!!!)

Let me know if you can't find the details and I'll take a look for you

x

Great news Avis

Well done for getting that done – the charity is amazing so I think they deserve every penny we can raise for them!

Take care
Debsx

Hi there

I'm not surprised that you're nervous, but hopefully we can all help to relieve that a bit!

Firstly, my consultant said that the % is more like under 1% and that is the case with most hospital procedures that are of significance.

I had my SCT a year ago, and Tom is right, it isn't nice,but you get over it…it's a bit like…[Read more]

Oh Keith,
So sorry to hear that news….I can't imagine how you must feel about it.
On the positive, I'm glad you can wait till after your holidays, and if it helps, I never suffered badly with revlimid when I had it with dex (or without the dex now). The worst thing was the fact that everything tasted peculiar….not horrid, just weird!!!
Have…[Read more]

This is an article from Cancer Research

http://info.cancerresearchuk.org/news/archive/cancernews/2011-11-27-Scientists-identify-first-genetic-link-to-myeloma

My understanding is that we may have something that genetically means we are more likely to get myeloma than other people. BUT, there is some unusual stimulus (and they still don't know…[Read more]

Hi KAren,

Welcome to the site. And drop Scotty an email and she will send you an invite to the under 50 site.

We're all here to help you through the early days, which can be really scary. But you will come out the other side.

Take care
Debs x

Hi Deborah

I think Dai has given you the low down on velcade. It worked brilliantly for me, but you must watch out for the Peripheral neuropathy and don't let your mum downplay it. I did and ended up with it for 9 months and needing quite serious painkillers.

It was absolutely worth it for the result, but I was worried at one point that I…[Read more]

Hi Paul….and Andy

I just wanted to say good luck to both of you with your next steps….I am sure that there are a number of treatments still out there so try to keep positive….though I'm sure it's Bl*ody hard at times!!!

Debs x

Hi Antoinette

So sorry that you have had to join us all here, but I would also say that there isn't a better place to be.
Reading your post made me think back to when I was diagnosed in 2009. I was 34 with a 2 year old and a 4 year old and it really does turn your life upside down. I think it is natural to be teary and to feel out of control…[Read more]

Oh jean I'm so sorry that the treatment has had to begin, but please please don't see it as he beginning of the end. After all, there are lots of us on here who have started that treatment and who are doing really well. And frank is starting from a really good position too!
I know it's a scary time and things will change now. But we're all here…[Read more]

Good luck Keith!
I really hope that things are good.
All the best
Debs

Hi all,

Penny's sister in law has let me know the following details for Penny's funeral.

Thursday 17th May. At 4.45pm.
It will be held at Emstrey crematorium, London Road, Shrewsbury.
Please donate in lieu of flowers to Myeloma UK, thank you.

Penny, you won't be forgotten xx

Helen, Just wanted to say a massive thank you for all of the bits that you've sent through for the Raffle we're holding. Really kind of you and the items will really help us.

If anyone else wants to donate anything, I'd love to hear from you 🙂 After all, it's all to help raise money for MUK!!

Also, we are desperately looking for a GREAT…[Read more]

Big hugs Bridget. It sounds like you're having a really tough time so keep that chin up and I hope that you get stronger. Are you getting your appetite back at all?
Lots of love
Debs x