[VickiParticipant]

Dai

Just wanted to say hi and hope you are feeling good and the treatment working. Failure not an option. Colin has his 100 days bone marrow assessment next Thursday to see how well we are doing. Fingers crossed for us 🙂

Vicki and Colin x

[VickiParticipant]

Hi kev and liz

Sorry to hear about the infection…..time to bin it into touch and get those ribs sorted. Not good weather to be out and about anyway, we are snowed in here! Slowly but surely the medical team and kev will back this mm into a corner. Go for it and take care 🙂

Vicki and Colin x

[VickiParticipant]

Andy

Glad to hear you are feeling well and yet again those pps have dropped…..doesn't matter 2 a cycle is good. Maybe this mm is giving up the ghost as you and the treatment continue to battle it. Another Greek holiday and that sunshine should just about finish it off I reckon!

Keep going and take care

Vicki and Colin 🙂

[VickiParticipant]

Hi Peter

Was thinking about you……good luck with your sct. Keep us posted. You are in the best place….weather rubbish here in the Forest of Dean. Snowed in 🙂

You know what the benchmark is but we all know Tom is super human 🙂

Vicki and Colin x

[VickiParticipant]

Hey Tina

Well done you!

Keep this going and may you have a long long long remission

Vicki and Colin

[VickiParticipant]

Sarah Jane

Good luck with you sct…..do and thread it's easier so that we can be supportive. I know when Colin was going through his it was a godsend to us both.

Take care

Vicki and Colin x

[VickiParticipant]

Hi David,
Sorry to hear you are relapsing, could it be a blip? I hear this velcade injection can do wonders. Someone my mum knows got a 10 year remission from sct then velcade whacked it into touch again after two injections…..maybe the velcade in ejection is just the job.

Keep warm and well….snowed in here in the Forest of Dean 🙂

Vicki and Colin x

[VickiParticipant]

Hi all,

Helen, thanks all went well and at least Colin was able to go! Sorry to hear you've been feeling so rough on and off. It's the time of year for it. I read one of your other posts about being angry you have this mm….it's hard not too isn't it as life seems a constant battle. Still as long as we are battling, we are here so that's good :-). We are snowed in at the moment. One good thing, not sure if anyone else has been offered complimentary therapy?. Colin has been offered qi gong(like tai chi), reflexology, aromatherapy, a course for 3 days on holistic whole life therapy and physio. We were gobsmacked….I can go as well and it's free…..wow! Colin has his bone marrow assessment next Thursday, weather permitting. It's scary as well know how successful it's been, so fingers crossed for us. Hope you are feeling better soon, I suppose it's better to do stuff and get a bug than doing nothing at all? Take care.

Hi Andy, glad to hear from you, wondered where you'd been. Glad to see you've got some stuff planned and hope you are feeling well. Our update is above. Take care and enjoy your planned breaks, stay warm and well 🙂

Vicki and Colin x

[VickiParticipant]

Hello Lesley,

My partner Colin is on the myeloma x1 trial. He took revlimid, dexamethasone and cyclophosmahide for 7 cycles and that took him into remission. He then had a stem cell transplant in early November 2012 and is recovering. Over those 7 cycles it was hard sometimes and Colin felt unwell sometimes, with a few infections inter dispersed. I would say that we were frightened at the start and although there were some hard times feeling overwhelmed with the number and frequency of tablets it paid dividends. The hospital staff are skilled and when it came to infections they treated them skilfully.

We found that writing down the tablets and frequency on a spreadsheet or in a book helped. That was my job to make sure that Colin took all his tablets at the right time….it made me feel good that I was helping too. I can't say what the pros and cons of the other treatments are because I don't know. We were recommended this regime and went with it.

It is a hard slog but worth it and surprisingly you do get used to it somewhat. I would say it takes some time to get used to this situation and even after Colin's sct, although touchwood he is doing well, it is hard to readjust. But go for it 🙂 please ask any questions you need to, if we can help we will

Vicki and Colin x

[VickiParticipant]

Hi jacqui,

I see that you said Sean Macpherson is leaving, well that's a surprise. New Zealand eh! Certainly a long way from Gloucester! Glad geoffs pps have got down to 2.5, who knows a couple more cycles and he could be zero!. Colin went to see the sct nurse today. Bloods all ok, he is due for a bone marrow assessment on 24th January to see what's going on in there, hopefully nothing :-). He hasn't been randomised yet, but I guess that will be the next thing to come up. Fingers crossed and hoping for complete remission! Good luck with yours

Vicki and Colin x

Maybe see you at EJU sometime!

[VickiParticipant]

Hi Ali,

Glad all is well. Colin's hair is really soft and fluffy. Someone recommended almond oil to rub in to get better quality hair? Ref your mums hair, judi dench style isn't too bad is it? Curly…that would be Colin's nightmare. Like your mum he has a selection of hats to wear out in this cold weather. He got an ear infection a while ago so it's pulled well down over his ears, which he hates! 🙂

I think Colin has been overdoing it but when he feels so well it's hard to stop him. He has gone from feeling as bright as a button to very very tired with just a hint of an upset tummy and a few gripes. Before Christmas it was the same but he had a cough and cold then too. His temperature has remained really static at 36.7 so much so I thought the thermometer had broken! The trouble is I've been so used to us going to hospital that at the merest hint of something I want us to go to hospital. What I'm not sure about is whether you have to go to hospital or to a Gp if there are no temperatures? He has an appointment with the sct nurse tomorrow so hopefully we will know more then if nothing else flares up! Hope not as it speaks of heavy snow down here later on tonight!

Have a great weekend and I hope your mum continues to improve x and looking forward to those holidays abroad ( I can't imagine that at the moment, we were too worried to go up and and stay in leamington spa overnight for Colin's dads service in case we had to go to the hospital! Hope it comes with confidence 🙂

Vicki

[VickiParticipant]

Hi Ali and Helen,

Glad to hear you both had good Christmases! How right your 9 year old is Ali! Sorry to hear your mum had a hospital visit. How's she doing now?

We had a good Christmas and new year too which was surprising given that Colin's dad passed away just before Christmas. What I was wondering is that Colin has been doing really well, his hair is growing back quite quick, can't get used to it! However just before Christmas he has a real feeling of fatigue and a bit of tummy trouble, sniffy nose and a bit of a cough, we went to hospital and he got tamiflu and antibiotics which cleared it up. What I'm getting to sorry for long story…. This last week we had Colin's dads funeral Tuesday (long day), Wednesday he went to have bloods done at hospital and then call in to see a friend who'd been in hospital (out most of the day), Thursday had to do some stuff for Colin's mum and then by the afternoon felt very fatigued, tummy a bit upset but nothing else no temperature etc. but he had been asleep last night from7pm and then on and off all day today. . Is that the normal fatigue following sct or is there something else we should be watching for? Is it me worrying too much?

Happy belated new year to you both x

Vicki

[VickiParticipant]

Hi Sarah Jane

Hope you got your print out and results were good!

Keep going

Vicki and Colin x

[VickiParticipant]

Keith

Sorry that latest set of treatments hasn't worked. What a b! Still as the other have said there's the old treatment. To have a go at it! You try and keep your chin up, this mm can be persistent cant it, but you keep going because where there is treatment that means a big hammer to knock this mm on the head 🙂

Vicki and Colin x

[VickiParticipant]

Come on Lesley you can do it 🙂

Vicki and Colin 🙂

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