[VickiParticipant]

Trish

Just wanted to say sorry to hear of the relapse…..I do believe this velcade is a very positive drug. Still I can understand how fed up you both must feel. One year isn't long enough 🙁

Thoughts are with you, on a positive note these drugs are getting better and better!

Vicki and Colin x

[VickiParticipant]

Hi carryann,

Infections 🙁 Colin did have a lot of them and we sort of knew when it was time to go to hospital. When there are children around its difficult cos they pick up all sorts, but as Tom said they are the grandchildren. It can be isolating to suddenly stop doing something because of mm, and that it so frustrating. We did not have many children around but the general rules apply in my opinion….if someone has flu stay away, or if they have bad colds, there will be times though when it's potentially unavoidable so we had plenty of washing of hands, using hand sanitizer etc. that way we tried to keep the germs at bay in a sensible way. There is no way of seeing the germs, but just be sensible and careful, you will know what's right at the time.

Colin did and still does get very tired. We just did tried to plan around the cycles, do stuff when Colin was well and not when he wasn't. Again in most cases you know when it's possible to arrange to do things and when not. However with regard to infections there was many a time when I came home from work, Colin having been ok during the day and then by the time I got home we were off to the hospital. It is a difficult and sometimes unpredictable journey But you have to keep going.

I would say enjoy your family and just work around the mm, hard but doable

Best wishes

Vicki and Colin x

[VickiParticipant]

Hi carryann

Hope you are feeling ok. You really have been through the mill. I found that making notes throughout the cycle prompted questions to ask the consultant, for example if Colin felt very sick, couldn't sleep in the night, got emotional or grumpy on the dex, went dizzy or had cramp in his hands. Usually asked things like is that normal, what does that mean, why do we do that. They normally told us Colin's scores in terms of blood so we'd ask about what they meant, was that good or bad, what happens next etc. we'd normally look for some reassurance as well. To be honest I tended to be the question master because I was so scared for him I was like a coiled spring and would blast out all of these questions.

It helped to,read around this condition as well because whilst sometimes. Little knowledge can be a dangerous thing I felt that we could,understand some of the terminology. Colin and I are experts lol, on infections, we were at the hospital at least once a month ha ha 🙂

Take care

Vicki and Colin x

[VickiParticipant]

Hi Vanessa

Sorry I can't really help on the detail. I know that there are lots of thoughts about acts, whether even they are the best route of using I think what they call novel agents in treatment, and there are lots of them being tested. At the moment though I think the balance is erring on the side of scts being a good option. I don't know why some people are offered various transplant options, I am guessing its very much to do with individual disease and conditions within it…. Have you considered asking the mm nurse team 🙂

Vicki and Colin x

[VickiParticipant]

Hi jean and frank,

Sorry you've had no date yet…..hope you are both keeping well :-). I'm worrying Colin has relapsed before we've even had his bone marrow assessment results. This mm worry messes with my brain I reckon 🙁

Before his sct Colin had not treatment from mid July til he went in for sct end of October 2012 but they never mentioned his pp score so we did not know what he went in with! Best of luck to you guys x

Vicki and Colin x

[VickiParticipant]

Good. Luck tebebe

It's always worrying when you start treatment. My partner and I were very worried but we both new it had to be done because it was the only option to best the myeloma. It was a battle between the tablets and feel well or not so well but keep battling 😉

Our thoughts and prayers are with you 🙂

Vicki and Colin x

[VickiParticipant]

Ann and Pete

Great news with the stem cells…..that prelixafor is wonder drug isn't it! Glad to hear things are on the move, but like you say it's scary all the same. Keep up posted on how things are going, and like I said before although an individual journey I'm sure there are common questions we all ask and worry about so ask away 🙂

We are awaiting Colin's bone marrow assessment results to see how he's done….worry worry worry! He's able to be out and about and starting plans to work part time, sometimes from home and other times at work. Again being careful not to over do it as he does get very tired.

Go for it guys…..have you heard from biker chris. Just wondering how be was doing?

Take care

Vicki and Colin x

[VickiParticipant]

Good luck joe and thank you for your efforts. Mm needs to be on the map so that it can be reclassified into a critical illness not a terminal one. Sadly not in time for your dad but you are a hero to carry on doing what you are.

🙂

[VickiParticipant]

Hey faith

Well done you, it's good to hear stories like this. It gives me such hope for my partner Colin who had his sct in oct/nov 2012. Keep going and good health to you 🙂

Vicki and Colin x

[VickiParticipant]

Hi Dai

Sorry to hear you are having a little stay in hospital! The hospital food can't be the attractions and you must get home as there is rugby on the telly at the weekend! Janet will have a nice meal for you,relax chill and wait for cycle three….keep going Dai we rely on you for updates 🙂

Vicki and Colin x

[VickiParticipant]

Hi all

Well you guys made me laugh! No gas and air, southern softies! 🙂 :-). You might be right, but I won't mention it to Colin as he's still grimacing at the thought of the bmb and we are still awaiting the results which is nerve wracking!

Thankfully the snow has gone but its v cold, not as much as up north! I'm trying hard not to fuss but its difficult. Colin had to sit down half way through the tai chi (only the first week) as he felt tired, so he was well fed up. I keep,saying slowly slowly we will get there! He had reflexology yesterday and he went to sleep within the first 2 minutes!

Helen it's encouraging to hear that others get tired but appreciate that's not much fun….although you might feel you we only part superwoman now I think you guys have gone through such an ordeal you are all heroes! 🙂 :-)…. Still coughing!!!?

Liz, Colin always thinks I'm nagging….bothered? 😉

Tom, 40 hours a week…..is that just turning up, or working as well, lol 🙂

Vicki' and Colin x

[VickiParticipant]

Hey Dai,

Good news re the side effects! Lets hope the bloods are good, out of hospital is always good 🙂

Vicki and Colin x

[VickiParticipant]

Daniel

You are a star! Also so glad to hear that your dad is making some improvement. The medical teams are great at what they do so you both have faith in them, along with the drugs and things will improve :-). Keep talking on here dan it really helped me when I was so worried about Colin and everyone's supportive and helpful.

Keep going 🙂

Vicki and colin

[VickiParticipant]

Hi carryann.

Welcome to the forum. My partner Colin was diagnosed in October 2011 and had an sct in November 2012. The key thing I would say is to stay positive, ask as many questions as you need to, be particular about taking your meds and recording how you feel and what you eat. We tracked this consistently so when we went to see the consultant we could tell them and also ask about anything of signficance, as its so easy to forget during the cycle.

Best of luck and good luck to you

Vicki and Colin x

[VickiParticipant]

Hi Dai

As usual a very comprehensive response about what's occurring elsewhere in the US and encouragement for others. I will catch up on your post but hopefully things are going well for you?

Vanessa, hopefully some of these posts are giving you and Stewart encouragement? We fully understand why Stewart might get low, as they can't do what they've been used to, running about here and there. We started tai chi last Tuesday and Colin was a bit despondent after because he had to sit down for a short while half way through and we had driven past the leisure centre where Colin played squash and badminton regularly. However we are coming to the conclusion that anything is possible, it's just a case of slowly slowly so keep your chin up both 🙁

Vicki and Colin x

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