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]

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]

Dear Min,
I really don't know what to say except that your post has brought a tear to my eyes and I am just so so sorry about Peter.
With all my thoughts and lots of love
Debs x

Thanks everyone for your responses….I've been 3 months off the velcade so have this horrid feeling this could be a permanent gift of getting a short term remission 🙁

I will definitely try to get referred to Macmillan for pain support…I'm hoping for something less 'druggy' as the gabapentin isn't doing much and nor is the…[Read more]

Hi Russell,

So sorry that you've had to come and join us on here but hopefully IF you get the official MM diagnosis, you can come to lean on all of us for help and support. I was 34 when I was diagnosed 2 years ago with smouldering myeloma. I then started treatment in 2010 and had my transplant just over a month ago.
It is tough going and you…[Read more]

Oh lovely Bridget,
I'm so sorry to hear that your instincts were right…..life is so unfair and you so don't deserve this.But as always, you are handling it with an inspirational grace and humour and that is a lesson to all of us.
Good luck with your appt next week – I hope they get a great concoction that beats the b*****d!!!
Lots of…[Read more]

Hi Keith,
I think I've missed something with you (haven't really been on here since my SCT in July!) but I'm glad to hear that you're home where you belong. Hope that you can stay there and stay well…..that sea air should help no end!
All the best
Debs x

Sarah,
I am so so sorry to hear that Gordon has passed away. Wishing you much strength in the coming days, weeks and months.
Thinking of you
Debs x

Hi Helen,
Haven't been on here for ages, but spotted you're due to go in tomorrow for your SCT and wanted to wish you all the best. I came out just over a week ago from mine (Day 25 at present!).
I was recommended the icecubes but was too embarrassed to ask for them as my consultant was dismissive. I got lots of ulcers in my throat which were…[Read more]

Thanks Keith!
Like you, I've lost a little weight since the steroids stopped and have this feeling that I may lose a fair bit more in hospital….they brought my dinner in earlier….quiche that was half uncooked and oven chips, again half uncooked (I don't like them at the best of times!). And while I asked for jelly, I got some sort of trifle.…[Read more]

Hey Lorraine,
What was the mouthwash called? Need to ask for it NOW!!!
Thanks
Debs x

Hi John,

I was in your position when I was diagnosed in July 2009. I gave in to the treatment option in November 2010 but I have to say, I wonder if I gave in too soon. It has been quite hard so if you don't have to do it, don't push for it. They will do it when they think they need to.

I'm currently in hospital having my SCT….hoping to…[Read more]

Oh it's definitely not just you guys! Loads of us (esp women it seems) have put on weight….I've put on nearly 2 stone and gone up one and a half dress sizes. Very depressing. But a little of it has dropped off since I came off the steroids in anticipation of my SCT on Monday. And I hope the rest will come off with the SCT itself….surely 2…[Read more]

Hi there.

I have been on the same trial and got randomised for the velcade too. I had about 4 cycles and then was stopped as I've had neuropathy since the beginning but it started to get worse and they wanted to stop. BUT, it has had good results and got my pp down from 28 to 8 (possibly less but they forgot to take the reading last tuesday so…[Read more]