[VickiParticipant]

Hi all

Thanks so much for your quick responses…..I reckon I worry for England and a bit more. World champion me :-).

Spoke to the sct nurse today and she said it was ok and no need to worry about anti virals. I still worry but a little bit less. Your support is much appreciated, :-).

Ali, yes we are ok. Had a bit of a blow with Colin's back. It's 6 months physio (vertebrae healed well but causing him to stoop as the fractur has thrown the vertebrae forward). Causes lots of pain….if the physio doesn't work major surgery on the cards (not a nice description so will save that). Hoping and praying the physio works! We are going out more and getting a bit more confident. He still gets tired though and the back isn't helping! How's your mum doing? 🙂

Andy like your motto….added to, a gift and unwrapping! Nice one :-). How's your renovations going? Hope all is well. We've had a few blips with ours but hopefully back on track now.

Take care all, be well and happy :-)…… And goes without saying healthy as well

Vicki and Colin x

[VickiParticipant]

Hi jean,

I haven't noticed that with Colin. Sorry to be dim,but could it be wind and gas? Colin suffered a lot with this and once we thought he was having a heart attack but it was gas, acid etc. I wonder whether its just the bowels/tummy settling down. Our sct nurse said a lot that they don't like being upset…..

Good luck with that!….roll on remission and hope you enjoy the football soon 🙂

Vicki and Colin x

[VickiParticipant]

Hi jacqui,

Glad Geoff is doing ok….I think the mental side of this is a tougher nut to crack! Colin is still suffering now and has been referred to the psychologist again! We are in clinic again on 14th August? How did you know about the info day in Worcester? I did not know there was one so close?

Vicki

[VickiParticipant]

Hi there,

I would ring the hospital yourself to check, also do you have a support nurse following sct? I would ring her. I did that a few times when Colin had his. He was released and I had to take him back in the same day…..he threw us and ended up with a temperature and another week in hospital. It's better to be safe than sorry. He may have collapsed due to weakness and lack of food.

Good luck

Vicki and Colin xx

[VickiParticipant]

Tracey

I can so understand your position. My partner Colin was diagnosed in 2011 age 56. I didn't want to show I was scared but was very very, for him and me :-/. I did keep asking lots of questions, but overtime learnt to do it in subtle ways rather than being like the Spanish Inquisition!

As David said this site is excellent so read up on the leaflets and speak to mm nurse Ellen, she is great….they all are!. Also did your consultant say if it was smouldering or the full whammy? I would suggest you ask lots of questions of them too?

Best wishes for your mums treatment, and use this forum to ask questions and vent worries…..it's such a help

Vicki and Colin x

[VickiParticipant]

Hi Peter

Welcome to the forum, this is a great boost. It's informative and also supportive. Before this site I read many and they were very scary, this one is factual.

My pattern Colin was diagnosed aged 56, having had no problems at all other than a bad back. He had a fracture in his vertebrae. He went through treatment of steroids (dex like you), cyclophosmahide and revlimid. Part of the myeloma x1 trial. He was brought into remission and then had a stem cell transplant last November, from which Ihe was to be considered in complete remission :-). So it's doable. The main problem he has is with the fracture in his back, causing real problems!

I hope your kidneys are ok now? Ask away on here Peter, I've spent the last12months doing that and it's helped so much!

Best of luck with your treatment 🙂

Vicki and Colin x

[VickiParticipant]

Hi all

Have you booked the hols yet jean!

To answer your questions Colin can fall asleep at the drop of a hat, he had three fatigue days at the start of this week but had second wind after that! So I think it's normal. We had a bit of a blow yesterday….he had a damaged vertebrae before diagnosis, at t12 in the back. We were told that architecturally the back is ok and the damaged bone has healed well….but it's healed in a way that cause Colin's back to stoop a bit and the muscles working overtime to keep it as upright as possible. Consultants view, back won't collapse in the near term, options are….physio for 6 months to see if they can strengthen muscles to give more support, and a corset on and off. If that doesn't work, major back surgery….his words were 'a big outing for you and I Colin' resulting in surgery going in through the chest and risk of damage to internal organs, in through the back and taking out the entire vertebrae, intensive care and 6 months off work if all went well :-(. Yesterday we were both unhappy bunnys…..we so hope the physio works, I don't want him to suffer any more….bloody mm! At least it's sunny 🙂

Vicki and Colin

By the way jean we are flipping WellPoint to book a holiday too, our extension has gone wrong too, no windows, no plumber…stressed no bin their Donegal worn the tee shirt LOL x

[VickiParticipant]

Hi jacqui

How's Geoff doing?

Vicki and Colin x

[VickiParticipant]

Hey Tom,

Well done…..you had a rough ride and the little incident with cells prior to!!!! But hey you are home now. Take it slow, it's a marathon not a sprint. That's a definite.

Well done and its right what they say, no place like home !

Vicki and Colin xxx

[VickiParticipant]

Hello John

Welcome, if you can call it that! To the forum. Know exactly how you feel, felt the same when my partner was diagnosed in 2011! In October 2011 to be exact, started with a bad back and then this! My advice is, stick with this forum and information….other web sites scare you to death!

Colin was and is still very fatigued, although he had transplant in November 2012 he call fall asleep at the drop of a hat, like now snoring away :-). Some days he is like normal, other really shattered. The treatment seemed to make him very tired but whe he was on the steroids he couldn't sleep and was hyper!

It is a real roller coaster and even now I'm not used to it, neither is Colin but hang in there. New treatments all the time. Stick together and you can get through it together. Ask away any questions 🙂

Vicki and Colin x

[VickiParticipant]

Hey Tom that's great,

Was a bit worried that there was no updates!

Great that you made it through. With your determination you will go from strength to strength

Vicki and Colin x

[VickiParticipant]

Best of luck Steve,

A bit perverse but your post gave me such a boost….remission of 9 years wow. My partner Colin was diagnosed in 2011!

It is a tough road but very best of luck with round two

Vicki and colin x

[VickiParticipant]

Oh Dai that's tough,

I get the impression you are very musical. It's a bugger to have mm but to give up the music as well.thats rough.

Lets hope that there are more treatments in the offing that can help you before these side effects get too far 🙂

At least it's sunny!

Have I missed the posts from mothas…..is he ok after sct?

Vicki and Colin x

[VickiParticipant]

Jean and frank,

Just caught up with this…..have been doing a bit of normal life! 🙂 two meals out this week! Hooray but even more hooray hooray hooray for,you guys. Absolutely brill 🙂 just got for it and enjoy your cruise, blow the cost of insurance you guys deserve it! Result 🙂

Football season here soon so get the cruise in first! LOL

Vicki and Colin x

[VickiParticipant]

Hi bev,

My partner Colin was diagnosed in October 2011 and like you we felt like we'd been hit by a steam train. What he had a bad back….no change there! Then we were like you into a roller coaster of X-rays bloods test and bone marrow biopsy! Then bang…it was mm and naturally I read every web site going before I found this one and was devastated!…for him for me for us 🙁 oh and I forgot he had a fractured vertebrae in back and had radiotherapy!

Then Colin was started on myeloma x1 trial taking tablets of revlimid, cyclophos and dexamethasone. His light chains went down from 31000 to 17000 . His pp was 17. After seven cycles his pp was non detectable and his light chains 750. He had an sct (stem cell transpplant) in oct /nov 2012 and it is successful!.

It wasn't easy, it is a worry but it can be done. Do you have support? Make use of it, seek a councillor and talk to anyone who will listen :-). You can do it. It's a hard road, but you can do it with support, good medical team and this forum to let off steam 🙂

We went out for a meal twice this week…..so there is Normal too. Also Colin went back to work full time this last two weeks. Very tired but did it. So can you 🙂

Vicki and Colin x

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