Hi chris,

Hope things are going ok….keep yourself occupied and counting the days till out.

No need to brag Tom, 3 years ahead indeed 🙂

We're getting a bit nervous now. Bits and pieces being charged up and gathered to keep Colin occupied whilst in hospital. I'll start a new thread for Colins SCT update as the other one is turning into…[Read more]

Hi mary and Charlie,

Sorry for the late reply…..missed the post. We hope Charlie is doing ok and you are keeping your head above water Mary :-).

Colin had many infections! And we were told when his temp went 37.5 and above we had to phone the hospital and invariably they said come in. Occasionally they let him come home with oral…[Read more]

Hi Tina,

Just wondering how you are and how it's going?

Vicki and Colin x

Hi chris,

Just joining in to see how you are doing :-). Hope you received your little cells safely back today and you aren't feeling too bad x.

Fingers crossed forma very speedy recovery……Colin building up for his go monday 🙂

Can't believe John ross is old enough to be in prison, I'm sure Dallas want like that when i was…[Read more]

Hey Kerry,

You are just being honest, no worries with that. Colin Has mm and I have felt so helpless and frustrated, are the doctors doing all they can, this question, that question, food what sort, drink fluids, enough, not enough?, why us, why him, life's unfair etc…..and there is only the two of us at home. You have all the rest to worry…[Read more]

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]

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 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]

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 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]

Dai,

Reading your posts I am dumb struck! Firstly what you've been through and secondly being unattended in hospital. Thank goodness you are on the mend 🙂

Vicki and Colin x

Hi all,

Chris, thanks for your good wishes and good luck to you too. Colin will be taking the iPad into hospital so he has contact with the outside world. I have already been told off for nagging Colin about making sure he eats even though the food is rubbish! I'm cooking some good Hearty food this week, and a stew on the go at the moment, for…[Read more]