Dear both

Just a quick line to say you are both inspiring. As you may know Colin has relapsed. He has just started velcade, dex and cyclophos. Hope it works well and quick. Peter how long have you had mm, i get the impression you have had a few treatments twice. Do you mind me asking….. Do you feel well generally. Did you have an SCT? The big…[Read more]

Hi Maureen

He had the transplant in November 2012. Apparently his light chains started going up in February 2014 but they didn’t tell us as they thought it could be a blip so they had to wait for an upward trend! So he got nearly 2 years but really showing signs from now only.

It’s such a difficult thing to deal with because you can’t see what’s…[Read more]

Hello eve,

Vicki here. This is a completely late post. I just haven’t been on here. This crap disease shouldn’t be allowed. I’m so sorry to hear about slim. I have read all of the posts on the thread and everyone has said it all. Gritty is an understatement. Best wishes to you

Vicki

Hi Andy

Vicki here, not posted for ages but often thought of you all. I’ve posted our updated to Maureen’s offtopic. It’s been interesting. So pleased to hear you are doing well and your pp’s are down so low. That’s absolutely great, brilliant news! That’s great for you guys. Is there any chance of a SCT?

So pleased for you and steph. Best…[Read more]

Hi Maureen

It’s me…..by chance I logged on tonight! We have had a really tough time. Where do we start. I posted way back in July I think when Colin’s light chains started going up. That was a real blow. But Colin seemed really well! Everyone kept saying it! Anyway we decided to try and enjoy ourselves in the hope that things might go back…[Read more]

Hi all

Well the appointment came and went….Colin hasn’t relapsed yet but had a biochemical change! Effectively it’s on the way but not here yet. Apparently Colin’s light chains have gone something like December 13 (normal 40), February appt 75, April appt meant 140, June appointment about 248 and we don’t know what they are this time so…[Read more]

David best of luck with the op…..keep going you have the right mind set. You might as well whack the prostate condition and mm whiles you are at it……you are positive so be headstrong and get that positive outcome x

Congratulations Tom, so glad to hear you are doing well. Always good to hear good news stories. Keep it up. Good luck with your move Carole and very best wishes to those with upcoming sct…..as Tom says it’s very doable

Vicki and Colin x

Hi there,

Andy is quite right. There are many drugs out there and we had the very same conversation with our consultant today. The jury is out about sct and whether drug treatment is the better option. Mavis has been mm free for over 2 years I believe. My colin had an sct but he’s now on the brink of return and he only got from October 2012 to…[Read more]

Hi David

Sorry to hear things were a bit rocky with the prostate, but glad to hear they’ve got it controlled….hope the hospital visit for the water will sort itself out. You and Andy seem to be enjoying yourselves….we must take a leaf out of your books!

Vick and Colin x

Hey all

Well done on your trips, so glad you were able to enjoy it 🙂

Vick and Colin x

Hey Craig, you sound like you have gone through the milk but glad to hear it’s all going in the right direction. Keep it up 🙂

Vicki and Colin x

Hi all

It’s very heartening to hear of your progress. 7 years remission seems an absolute age and well done you. All of the good news stories give encouragement, if a little wistful if Colin is on the way back after 18 months….he’s never done anything else by the text book so it’s amazing it seems he following the book on this one!

Good for…[Read more]

Hi Andy

Thanks for the encouragement. It’s weird because Colin has on the whole been very good of late. He has a few spells of tiredness but generally ok. Part of the fatigue is the worry about the results I’m sure! Colin reckons the consultant said that if pushed he’d say it was coming back because we were at the 18 month average. I don’t…[Read more]

Wishing you all the best victoria. What I’ve found difficult is that I like to fix things and can’t damn well fix this condition, as much as I’d like to! Glad you have found some solid ground and very much hope your mums treatment starts to hit the condition!

Look after yourself too 🙂

Vicki and colin x

Hi Maureen,

Firstly hope you have a great holiday in Cornwall. Lovely whatever the weather!

It’s very odd Maureen, Colin has been better recently than had been for months. I wasn’t sure from the consultant whether they went up the time before and he hadn’t said anything or whether this was the first time they’d gone up. If it was the first time…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]