Nice photo chris, by the way. Only just noticed to click on it!

Hope Lena is feeling ok, and trying to keep relaxed!

Vicki and Colin x

Hey chris,

Tuning in to see how it's going. Did you have chemo today?. Hope all is going well and that the accommodation and food is up to spec! Dallas….. John Ross, he was a nipper last time I saw Dallas! Keep you chin up and go for it 🙂

Colin has had his line in for ages after all our false starts! He did get used to it, and has found…[Read more]

Come on Andy, my money's on you :-). It's a real drag for you and steph, but hey Americas not far so if that's the closest match. Andy 1 mm nil! 🙂

Vicki and Colin x

Hi all,

A real flurry of activity so will try and cover all the bases! We put a photo on cos we thought it rude to speak to all you guys and know what you're like and we remained anonymous!. The new date for SCT Jean is Monday 29th oct, that said we did geta letter saying Thursday 29th but we think that's an admin error so keeping us on our…[Read more]

I got PN when I was on my original CDT treatment in 2009. I call it "sponge feet? because that is what it feels like. I also suffer from very cold hands and feet, and they are cold as opposed to being hot but feeling cold.

My sponge feet have got marginally better in that I have got so used to them that it is no longer even mentioned, the…[Read more]

Well done Kevin, we all love good news stories!

Jean, I'm pretty sure they don't have to get the pps down to zero. I think one of the key indicators is this balancing of kappa and lamda (there is this ratio but I can't remember what it is). They look at treatment scores form example waiting for the pps and light chains plateau, or that the side…[Read more]

Hi Andy,

Thanks for your support :-). I really hope you get to see the main man next appointment. Sorry you are feeling poorly at the moment. We hope your pp's are continuing to come down. Maybe just a bit more sunshine would help them along! We were fed up with the change of date but hey another opportunity for me to make sure Colin has some…[Read more]

Hi Amanda and Bob, just a quick welcome(?). I have been here since 2009 when I was diagnosed with Myeloma G, the bog standard one. It is just not the forum that is so great here the site itself has so much UP-TO-DATE useful information on it.

look forward to seeing you on the forum but now I must go play World of Tanks with my…[Read more]

Hi nettie,

Colin was told to avoid pools and gyms, too much infection about…..what about some home exercise like exercise bike or something similar. Bit antisocial I know but it would keep you ticking over until you are able to use pools again?

Vicki

Hi sarah jane,

My partner Colin is on mx1 trial. He had revlimid,dex and cyclophosmahide. He had 7cycles and pps and light chains came down to virtually nil. He did have some ups and downs, and we did spend a few occasions at the hospital with temperatures. However overall the medication did the trick and he is waiting for an SCT now. I cant…[Read more]

Hello all

Thanks very much for your kind words and advice, as usual much appreciated. We were a bit fed up but what can we do, so instead treated ourselves to a really nice meal out :-). Colins appetite has been a bit up and down so good to see him eat a bit. It gives me an opportunity to build him up ready for the rubbish food in hospital,…[Read more]

Have a great day Dai, you deserve it buddy.

Kindest regards – vadbyte

David

Hi Vicky, My most sincere condolences for your loss. I know how you feel, 26 years ago my 19 year old son died. It took me 18 months to speak his name without crying. You feel the world should stop or something but it just carries on. It is hard, real hard when you lose someone you love.

Your Mum will need you more now than she has ever…[Read more]

Best of luck Collin, and Chris in Ward 9, They are a great bunch in there, the Ward Sister has been on the cancer ward I think for some 21 years, unless I got it wrong which would not surprise me.

If you get problems with your throat, I did, no matter how many mouth rinses I took, I can suggest: Complan mixed into a milk shake, Ice cream and…[Read more]

Hi all,

Minor setback!. Went to see the SCT nurse yesterday for final consents. SCT has been delayed a week because there is nobody avaialable to come up from Bristol to reintroduce the stem cells on the days required. We were a bit shellshocked really as we weren't expecting that. Still regrouped and head back together. Will have to be a week…[Read more]

Kerry and Melvin,

What a nightmare you two have started with. I feel humbled by what you have gone through. My partner Colin was diagnosed age 56 and had a vertebrae at t12 in his spine, damaged by this condition. It was a bxxx nightmare when we heard what he was diagnosed with, and no understanding of what the he'll it was! I've tried to…[Read more]

Hi Kerry, Welcome (?) to the site nobody really want s to be, but, we are glad we have the site and the friends and support it develops.

The real big problem with Myeloma is that in every human being it is different same basic characteristics but just about everybody reacts differently. So giving advice or encouragement can become a bit of a…[Read more]

It really is a strange old decease and that is for sure. But glad you are feeling on the up.

Kindest regards ? vasbyte

David

Hi keith

Sorry you are a bit up and down at the moment but glad you are feel well with it. Just wanted to add our two penneth of moral support 🙂

Vicki and Colin x

Hi Emma and mum cathy

Welcome to the forum. My partner Colin was diagnosed in October 2011, age 56, has been through 7cycles of rcd on the myeloma 11 trial and is going in for stem cell transplant next week. Like you Emma and mum, we had never heard of myeloma before and like you I scared myself half to death with the Internet. It definitely…[Read more]