[VickiParticipant]

Hello Ian

Jay to give your dad some encouragement……a colleague of mine has prostate cancer and he has been told it’s very treatable and taking medication of a regular basis can control it. I realise it’s a real blow to have that and myeloma! I so hope that you get some luck and that your dad makes some progress to remission

Best wishes

Vicki and colin

[VickiParticipant]

Hello Graeme

Sorry for the belated reply. My partner Colin was diagnosed in 2011 after suffering mega back pain. Like you he had tried all sorts of painkillers, a specialist back consultant who missed!!! Reference in the report to a myeloma wedging in his back and finally and thankfully his own Gp who was on the ball,referred for detailed blood tests and myeloma diagnosed.

The roller coaster began and we thought how were we going to get through it, we did. Colin had an sct in November 2012. His back was terrible at first and he couldn’t walk from chair to chair. Then with radiotherapy, some gentle exercise and very good pain management he got to where he is today. Actually ridden his bike a few times!

He has had 19 months remission, although this last week his consultant said his light chains are rising…..so we don’t know what the future holds. That said there are lots of treatments out there and just wanted to give you the encouragement that life will get good,and a new life starts. Yes it’s different with myeloma as it’s always there, however grasp every moment, battle the treatment and give yourself some goals. Hope this does give you some encouragement and best of luck with it

Vicki and Colin x

[VickiParticipant]

Hi victoria

I know what you mean, it is frightening because it’s unknown. It’s unpredictable and each person is different. I tried to harness my fear by helping Colin as much as I can, ask questions in the right places and just being there. When I think of the ultimate and if he wasn’t here it makes my stomach churn. What those nasty thoughts do is make you tired and not be able to enjoy the day. I have cried several times (on my own) since we had the results about his light chains, it’s natural.

I’m sorry your mum is in this myeloma bubble but I wish you all the best and so hope your mums treatment starts to get to grips with it

Best wishes

Vicki

[VickiParticipant]

Thanks for that good advice Mavis and well done you for your ongoing remission! Glad to hear the scooter is making a real difference for you and less lifting for your husband, we have had a good day today. This is what I don’t understand Colin is very well, eating well and generally ok so it doesn’t seem right. Now I’m sitting here looking for signs or what I’ve missed seeing if the illness is coming back, that’s said if I couldn’t spot it when his light chains were 31000 I’m not likely to spot it when they’re 200! Enjoy the good weather all 🙂

Vicki and Colin x

[VickiParticipant]

Hi Rachel

Just caught your question…..yes yes yes get another opinion, there are lots of options talked about. Don’t take no for an answer. Some might not be avaialb win Europe yet but leave no stone unturned. I don’t understand how they can say there are only two options

Go for it and best of luck. Hope your dad is feeling a little better

Vicki and Colin x

[VickiParticipant]

Thanks for this encouraging story gill. Very much hope that your mum is feeling well and continues to improve

Vicki and Colin x

[VickiParticipant]

Well done Keith whata great result. You must feel over the moon!

Vicki and Colin x

[VickiParticipant]

Hi Andy

Just read how low your pps are…..that’s great isn’t it. Sorry to hear about your back troubles. Keep a close eye on that eh…..Colin and I had stepped outside the mm bubble for a while but it seems his light chains have risen from 110 to 220 so we were told to start mentally preparing! Here we go again!

I so hope your drugs are starting to work for you! Is there any chance of an sct with them getting very low now?

All the best you are an inspiration!

Vicki and Colin x

[VickiParticipant]

Hi Sharon

My partner Colin was diagnosed with mm in October 2011 with a transplant in November 2012. He has been in remission until June 2014 where his lights chains appear on the increase……we are hoping its a blip.

Having read your posts you do have a really complicated condition but do remain positive. Hard but it’s the only way…..can’t help you with anything medical but just wanted to chip in with some encouragement 🙂

[VickiParticipant]

Hi all

Thanks very much for your encouragement. Colin’s light chains started at 31000 so I don’t suppose they would let it go that far! We are still marvelled by the fact that he didn’t have any kidney damage so if there is any luck at all in this we were lucky then!

I’m really heartened to hear of the potential for a blip. Ellen the nurse is also sending me a booklet on the light chains testing so I can get my head around that. I’m trying not to go on too much about it though as generally Colin is taking this in his stride……on the face of it! Trouble with me is that I want to fix stuff and this is one thing I can’t do 🙁

Mavis we are taking your advice to get a holiday in so that we can get all our friends together too. We started last night by going out for a really nice meal. This is what I can’t understand Colin is so well (touchwood), better than he has been for months! Mavis if I recall you didn’t have a transplant did you? Did you get to remission with the medication only? Is it lasting? Colin doesn’t have an cells in the back pocket and they had real problems getting them last time so we don’t think it will be an option again even if he wanted to give it a go!

Thanks to you all your support really matters

Vicki (and Colin)…..I feed him snippets of info!

[VickiParticipant]

Thank you all. All of your posts are very supporting. They in turn have made me encouraged and laugh…..I too must get my big girls pants on! I am not sure now whether Colin’s figures have been on the rise twice in a row or now. The comparison figure we got was something like 110 rising to 220. I’m really hoping it was as a result of Colin having had a virus when we went to mauritius but my negative head says doubt it.

Fingers crossed though! Best to all and enjoy this lovely weather 🙂

Vicki

[VickiParticipant]

Hello Keith
Just caught up with this thread. Well done you. Glad to hear you are doing well post sct. The appetite took a long while for Colin. He has since started to eat normally and put on weight. He still gets tired on and off but he’s done well so far.

Hope all going well for you Tom?

Vicki and Colin x

[VickiParticipant]

Mike

Just wanted to say thanks for the post. My partner Colin was diagnosed in 2011, had sct in November 2012 and has been in complete remission ever since. But I feel nervy as time goes on, as we were told the average remission is 18 months…..it’s always good to hear of someone who gets a long remission. Long may it continue for you. It’s given me heart and I’m trying not to worry so much on Colin’s behalf!

Best wishes

Vicki and colin

[VickiParticipant]

Hi Susan

Just wanted to say I hope your results are good. As Mavis said your pps are low. Our consultant doesn’t say exactly what the results are just that they are ok, long may that continue!, just keep going and if there are things you believe in, carry on 🙂

Vick and Colin xx

[VickiParticipant]

Ali, hi, just caught up with this post! What a bugger I can’t believe this. Why can’t this mm just stay out of our lives, I’ve had one of those days when I’m having a downer on it…..Colin’s fine but I’m having a what if time. As regards your mum I don’t know what a plasmacytoma is….is that the same as when Colin had a fractured vertebrae at t12?

If so he had one big session of radiotherapy. It lasted about 4 minutes or so. Afterwards they said he might feel a bit sick, bit breathless and a bit tired. Which he did for a bit. I had to rub special cream into the area, a square on his back to stop it going like sun burn. It didn’t hurt or anything. Hope this helps.

I’m finding it really hard to look back at the moment…..sorry to hear your mum is in this situation Ali. 🙁 hope you and the family are ok?

Vicki and Colin x

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