Andy

Enjoy your break away with steph, and the beer. We think the weather is looking good for a while so no brollies!

Good luck with the treatment regime.professor Jackson will have a plan, they mostly do 🙂

Vicki and Colin x

Hi all,

Ali, I have posted you a reply to your messages, thanks 🙂

It has been a rubbish day and we have both felt quite fed up. It is absolutely soul destroying when they tell you the magic number has not been reached. It really is a case of so near yet so far. It is a real shame that the prelixafor is not available as a matter of course.…[Read more]

Hi Tina,

Colin has had his line in for a while now. It is really useful for the blood samples etc. Whilst he thought it was s bot of a nuisance to begin with, it has been very useful.

Hi Stephen, how are you getting on after your SCT. We were wondering how you were doing. Colin has had two goes at stem cell harvest and neither worked. We are…[Read more]

Hi Dai/all,

Just got back from the hospital. His numbers had not budged from yesterday. We saw a young doctor who told us the scores this morning and was very sorry for us. He did not however want to preempt what our consultant might say. When we came home yesterday we thought this would happen today so contacted the hospital to get an…[Read more]

Jean,Ali,Helen,Andy

Thanks for your support. I felt quite emotional and supported when I read them. Colin will read them too. He was almost tempted to post himself and thats a first.

Andy, I feel bad moaning because you seem to have had such a struggle to get your pps down and here you are taking the time to support us. I so hope your pps…[Read more]

Congratulations Wendy,

Good on you! And your cells!

If only we could get colins out to start on this trail 🙂

Vicki and Colin x

Hi Jean

Thanks so much. I hope your husbands treatment is going well (Frank isn't it?). I have also been following your posts too. We are expecting a complete failure tomorrow and so phoned to get an appointment with the consultant on Thursday this week so that we can get a good understanding of where we go from here. We were so fed…[Read more]

Hi Ali and all,

Day 1, FAILED. absolutely gutted. Score was only 1. Worse than last time, it started at 5 then. The chances of it working tomorrow would think is less than a snowball surviving in hell……and this is hell.

No hope for tomorrow and we don't have a plan c and the stem cell nurse is on holiday for a fortnight and no one to…[Read more]

Hi Ali

Hope your mum is still on the onwards and upwards ladder!

We've had a good weekend thanks, but I've found lots of jobs to do to keep me busy. Colin has felt like he has the flu and some aches and pains today …..:-), could this be stem cells!

Bit nervous tonight as we are off to Bristol in the morning for a second go…..fingers…[Read more]

Hi lyn,

We can really sympathise with you and the timescales, and now getting close becoming nervous…….we are, but Colin with mm is less likely to admit that than me! It really is a roller coaster of what happens next. Last we Colin had his cyclopriming. At first they thought his blood count was too low so may not be able to do it, upset…[Read more]

Andy

Keep your chin up….at least the pps are going in the right direction. You have a lot to fight for. You have been so supportive to Colin and I so we need you to stick with it. :-). I get what you say about the mixed emotions, and the highs and lows. It must be hard for you because the progress is slow……but it is progress now…[Read more]

Hi Amanda and bob

Welcome, you are right. This is a very supportive helpful place. It has been godsend to Colin and I. Colin was diagnosed with MM October 2011. Until then we had never heard of the condition. Others experience and knowledge has helped us no end.

Good luck with the treatment x

Vicki and Colin 🙂

Hi Mari,

Good to hear from you…..I was wondering what was happening. I assumed Stephen had already gone in and praps you did not have time to post! This waiting game is really hard isn't it, for all concerned. I hope all goes well. Colins new date is 24/9 as long as the harvest works this time…..Monday coming, so fingers crossed.

Hope…[Read more]

Hi Charlotte

My partner Colin has mm, diagnosed last october 201-. He had a vertebrae fractur at t12 on his spine, they did radiotherapy. Is that the same as a plasmacytoma? He did not have any other lesions. He had 7 cycles of cyclophos. Dex and revlimid, and is now waiting for SCT. His pps went down to zero and light chains were 700 which…[Read more]

Blimey Maxine,

When I read your post I felt so sad for your sister and you and the rest of the family. The mm thing is clearly no respecter of age…..when I first read up on it I thought Colin was young to have this at 55, but wow there are many many younger patients. I can understand the shock and trying to come to terms with.

Our thoughts…[Read more]

Result eve and slim,

Thanks for the encouragement too!. Wot you two waiting for…..get off on that cruise and treat yourselves to something special. Enjoy 🙂

Vicki and Colin

Hi Craig and etta,

Hope all is going well and those cells are starting to improve! Hope the d &v are also reducing. I found Ali's posts about her mum really helpful, planning ahead and realising we are all in is together.

Look after yourself too Craig as etta will need tlc when she comes home, and it's not good if you are shattered too! ,…[Read more]

Hi Dai

Thanks for your good wishes. Hope those gcsfs are starting to work. I thought of you when we were at the hospital last Monday……one in the hope your virus was sorted, and secondly when they told us they would not fund those prelixfor? Injections….Colin had to have the toxic cyclo prime!. This was our first experience of postcode…[Read more]

Tom,Ali,

Know what you mean….I worry if I think I am not worrying!, then start asking myself am I immune to this worry, got used to this mm thing? (never!). That said I can't imagine we'll ever be the same. Last night Colin was looking out of the window and there was a plane vapour trail. He asked whether I thought we'd ever go on holiday/on…[Read more]

Hi Helen

Sorry to hear about your neighbour. Very sad. A similar thing happened to one of our friends 12 months ago and it has taken some time to get our heads around, certainly his wife!

On a happier note very pleased to hear you are back at work full time, even though boring and with wobbles…..that is progress?

This mm thing really…[Read more]