Hello Helen

congratulations on coming out the other side and feeling well lets hope for a really long remmission
KEEP WELL
Love Jo x

hello Gina
so sorry to hear about your gran your mum doesnt need this at the moment
she must be stressed enough as it is, she is so lucky to have you looking out for her
Love Jo

What great news Dai.

I am so so chuffed for you and hope that the velcade keeps doing its job!!!

Debs x

Helen
Here's to a long remission. I am just over a month post SCT and if it gives you hope, the last two weeks have seen a big improvement in my energy levels. I still need an extra couple of hours sleep a day, and have odd days where I feel terrible and sleep all day, but all in all, those are getting fewer and fewer and there is a light at the…[Read more]

Hi Sandra

Good luck with it all…I'm a month post transplant now!

I was told I could have a duvet etc….some people I know were told they had to take a brand new one in if they wanted to, and I was told I'd need to change the cover every day or so….I ended up not bothering even though we had the new duvet at home…i was so hot in the…[Read more]

Hi Keith,

Glad to hear that you're out of hospital and on the mend! It's a good feeling isn't it?!

I was also quite ill…from day 1 sadly….and lost over a stone in weight. Luckily, unlike you, I could afford to lose it as it was all weight I'd put on while I was on the Dex. So for me it was the one positive that I got out of the whole…[Read more]

Well Bridget

they say every cloud has a silver lining which seems to be the case here so glad it has helped you pain what a good result

Love and HUGS jo xx

Hello Scott
thanks we had a good holiday I hope you have a great time in Spain,8-)
I take the premidrinate for the Myeloma to strengthen my bones my sister in law calls it my bone food! I also take sodium bicarbonate tabs for the kidneys 9 500mgs a day also an alpha calcidol 0.25 three times a week kidneys seem stable at the moment When first…[Read more]

Good luck with your group chelle I attend one in Welwyn Garden City Hertfordshire with my husband who is my carer We have found it so helpfull
just to talk to other people in the same situation

Regards Jo

Tom

you are so cheeky you always make me laugh I agree about the Docs mine are the same its always" we can only make 48 hour apps, can I have one no we are full up phone back tomorrow its an emergency whats wrong with you thats my business and so it goes on. The road trip to scotland was good only two days rain which was in the highlands it…[Read more]

Oh Tina
They've postponed it till next tuesday- I cried when I got the letter! I feel like my toes are broken tonight…worse than they've been in ages. It's partly my fault as I've overdone it today and not had a sleep but it's depressing to know it could have been looked at tomorrow and now I ve got another week to wait.
Enough moaning!! Down…[Read more]

Hi nadine.
Ask away on the question front. I was on the myeloma xi trial and had rcd ( revlimid, cyclo & dex). I plateaud quite early and went onto velcade. I don't regret the Sct yet although if I'm honest there were times in hospital and when I got home when I wished I hadnt done it as life seemed so hard. But now there is a light at the end…[Read more]

Hi Nadine,
Welcome to the site although I'm sorry that your mum has MM.
Why are you finding it hard to discuss it with your mum? Because of how you feel, or because of how she is? I think if you can talk about it with her, all the better for both of you….you can support her better if you understand how she feels and also, my personal view is…[Read more]

Oh Min
nothing much I can say but I am so sorry you both fought so hard for it end like this my thoughts and prayers are with you

Love Jo

hi Ali

Just got back from holiday so sorry for delay in replying I was diagnosed in Jan 2009 with MM and renal failure at one point just 10% just managed to avoid diaysis I had CDT until may 2009 and apart from premidrinate once a month a lower dose of 30mgs to protect my kidneys and sodium bicarbonate tablets for the kidneys no other tratment…[Read more]

Ahh, thanks Tina!!

Let me see what they say to me on the 13th and then if I'm allowed to use one, I'll pop over if that's ok with you….would be good to catch up and once the kids are back at school, that'll be easier!

Love
Debs x

Hi Paul

Welcome to the site….it's a great place for support etc.

I am 36 and was diagnosed at 34 with smouldering MM. It developed and I started on revlamid on the Myeloma XI trial. Plateau'd quite early and went onto velcade and am now 44 days post SCT. Just for a bit of history!

Take it easy, fit the drugs round you as much as you…[Read more]

Oh Gill,
How awful to have that put on you too…I hope so much that they've got it wrong and that you don't have to deal with anything more than what you're already coping with.
Love
Debs x

Hi Dai
Funny you say that oramorph doesn't work at all, as when my neuropathy first got bad, it really worked! In fact it turned my life round for the week before my SCT. But ever since, it hasn't seemed to work in the same way. It does work a little, I think, and I tend to take it to help at bedtime – not sure whether it just helps me sleep…[Read more]

Bridget,

Hope you're doing ok and that the pain is coming under some sort of control – when is your radiotherapy? Make sure you let them help you if that doesn't help. Pain is horrid and if they're offering alternatives you should take them….I'm going to try to get hold of our local macmillan re my neuropathy after your…[Read more]