[VickiParticipant]

Hi Paul

That's great.Colin has a date for SCT, 14 august. He went in to hospital today for the line to be put in, gcsfs started on the weekend. Harvest this week too.

I wondered how you were getting on, hope all goes well for you and glad you got a break in

Vicki

[VickiParticipant]

Hooray Mari, well done Stephen! (I reckon he was making you sweat a bit for the holiday….LOL 😀 thanks for the encouragement and we hope you have a great holiday. We are going to enjoy our summer, over the next two days probably! LOL

Keep us posted how it all goes Mari, and I will do the same.

Take care all and enjoy your weekends.

Eve, how's slim doing?

Vicki

[VickiParticipant]

Hi Andy

Glad to hear the radiotherapy went well, Colin had a blast of it at the start of his treatment and despite feeling a bit tired and short of breath was ok, and he has not had too many problems since. Colin also had cyclphosmhide as part of his treatment and was effective, so I hope it's the same for you. Its about time you were given a break so what's wrong with 3 out of 3 for once!:-)

We have been preparing for the gcsfs in advance of SCT harvest, daunting but onwards and upwards as Tom would say.

Vicki and Colin x

[VickiParticipant]

Gosh, hi to all and what a series of events.

Mari, I hope Stephen gets the right number of cells, and you both get the holiday. You will both need it! Colin is due to go for harvest Wednesday and gcsfs start tomorrow (apprehensive). We were told today that SCT has been brought forward a week so he is now duemin on 14th august.

Ali, your mum sounds a hero, as does your hubby. I am still debating about doing the head shave for Colin…… Not sure I can do it. We'll see nearer the time. I hope your mum is feeling a bit brighter. When is her SCT due to start? Children can be a real godsend and can be relied upon to make us laugh, and ask the questions no one else dares! Helen, very brave to cut your own hair off, but hey great style again now.

We've been manically trying to get lots of jobs done before Colin goes to hospital. I am sure I read somewhere no DIY for a while after due to dust, fumes etc. Hope I am right otherwise we are DIY SOS for nothing

Looking forward to this next phase with trepidation. We saw consultant yesterday and did not realise how serious it was at the outset. It nurse out bone marrow was 95 percent plasma at diagnosis, now down to 5 percent which we are told is good. All other bloods are ok, just need Colin to part with his stem cells

Vicki and Colin x

[VickiParticipant]

Hi stephen,

Well done and so pleased for you…..it's great to be home I bet!, glad things went well for you and looking for ward to a long long remission!. Colin is due to start his gcsfs tomorrow and then have a line put in on Monday. Wednesday/Thursday we are at Bristol, for harvest, then if all goes well we are in for SCT 14th august (it has been brought forward a week). I know Colin is very apprehensive about this next stage, from the pain caused by gcsfs to the SCT itself, but it is people like you that give him and I the encouragement to carry on.

Good luck, take it easy when required and be healthy

Vicki and Colin x

[VickiParticipant]

Hi Amelie,

Good for John and we hope all goes well for you both

Vicki and Colin

[VickiParticipant]

Hi mike,

My partner Colin was diagnosed last October 2011, like you at a routine appointment! We were shocked, scared and unaware of this condition! He has one wedge on his vertebrae, has been able to work most of the time, either from home or at work, during treatment. He is waiting a SCT in august. To be honest once we got into a routine we just challenged this head on, asking lots of questions, making notes on how Colin was feeling, eating etc. I have tried to be careful about what he lifts, just in case of any other fractures accruing. I assume you are starting treatment, so welcome and good luck!

Vicki and colin x

[VickiParticipant]

Hi Mari,

I just wanted to drop you a line, hoping that all went well with Stephen and his second harvest. I too am just a bit relieved at the thought of being allowed a second go if needs be. Colin's consultant said she was worried they wouldn't get enough for one SCT let alone two! I am worried because the preflixor (sorry I mean that injection that boosts mobilisation), is not available in the south west so I hope the gcsf injections do their things!). I understand how hard it must have been for you to let Stephen go on his, I am following Colin around, fussing like a mother hen!:-D

Best wishes to all

Vicki

[VickiParticipant]

Hi Alison

That's great for your mum.well done to her! Showing off LOL! I hope Colin gets as many. He is due to start the injections on Saturday evening with harvest planned for 25/26th July. Really pleased and hope your mum is feeling pleased with herself. 😀 🙂 . Keep us posted.

Vicki and Colin x

[VickiParticipant]

Hi Karen,

Like the others I am not medical, but can only share my experience, my partner Colin was diagnosed with myeloma last October 2011, having had few symptoms, following a random blood test. His bloods revealed a paraprotein presence and indeed bence jones free light chains. I believe the light chains are a kind of waste product filtered through the kidneys, due to a malfunction in the blood , something to do with binding of light and heavy chains, going wrong (this is not a medical definition but me trying to understand it myself!).

I would think that the medical team will be able to help you further, as they progress their tests. With Colin they did urine tests, several blood tests and the bone marrow sample which revealed myeloma. As eve mentioned treatments are coming on leaps and bounds and whilst we have been worried about the treatments Colin has received he has worked through it with the help of a great medical team, and is now waiting for stem cell transplant in August.

I hope all goes well for you Karen. Please ask if you have any questions, will try to help

Vicki and Colin 🙂

[VickiParticipant]

Hi keith,

Glad to hear you are making sone progress…..easy for me to say, no pain no gain ha ha !

Good luck with your consultation Dai

Vicki and Colin x

[VickiParticipant]

Hi Suea,

Just wanted to add our thoughts to the others. As far as I am concerned I would leave no stone un turned, unless of course my partner adamantly did not want it.the medical teams are fantastic but it has to be joint decisions, trying everything! Go for it and I hope all goes well x

Vicki and Colin x

[VickiParticipant]

Hi Tom,

Thanks for the advice, much appreciated. Since Colin has been off treatment waiting for the big one, in the first 4 weeks he said he felt so tired and was a bit disappointed that he did not feel better. Well touching wood, how that's changed this week! He said he felt something 'change in his body', he's been back to near normal, tired by 9pm but I put that down to the fact he has gone to work full time this week, and he looks so much better (hopefully not tempting fate)….I've got a cracking cold so I hope he doesn't catch that, bad timing over the next few weeks!

I hope this is a sign of things to come…..like the special nurse said you will feel much better by the time you come in for SCT, then we make you feel poorly again 🙁

Hope everyone is doing ok,have a great weekend all

Vicki x

[VickiParticipant]

Hi Stephen,

Have been thinking about you! Glad to hear you are doing well and things aren't too bad. Your time in isolation has gone fast! Well, for us anyway, maybe not you 😀 Not long before you are home maybe? Keep going, onwards and upwards as Tom would say

Vicki and Colin x

[VickiParticipant]

Hi Etta

Good luck to you and good luck with SCT.I hope you are well recovered to visit your family in Oz. How fantastic. We are dreaming of a nice long hot holiday, but would make do with anywhere, as long as Colin is fit and healthy. Sounds like a few of us will be going through it one way or another in the next few weeks x

Vicki and Colin 🙂 🙂 🙂

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