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]

I guess your MUm’s appointment must be coming up this week. Are you gong with her, if not you should? Take paper and pencil if you have not got a good memory to make notes, some people even take mini recorders, it might be a lot to take in at the first meeting.

I wish your mum all the best of luck

Kindest regard – vasbtye

David

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]

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…[Read more]

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

Vicki and Colin x

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

Vicki and Colin x

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

That is good news Andy. I have always marveled at your pp readings balanced against the things you do. 11.25 is not too bad and for you it is a bl888y miracle. I bet you go lower at the next treatment. I think your totally committed, with that touch of devil may care, attitude certainly helps you live with Myeloma.

all the very best -…[Read more]

I think all forums go through phases. The change over of forum format was a little traumatic some people just gave up posting I think. It will come back.

Kindest regards to all – vasbyte

David

I have had the taste problem since 2009. I found I could only really taste strong tasting food. I developed a passion for Peanut butter and raw Spanish onion sandwiches!

I have now moved onto Revlimid and surprisingly went into remission after the 2 cycle, I have now done 9 cycles.

My poison of choice has always been Guinness which I stopped…[Read more]

Best of luck for huby’s cement job and SCT.

The SCT can be a bit dauntin but it is well worth the effort in my opinion. I did not get into remission from it, pps only went to 2.9, but they stayed that way for a number of years.

kindest regards – vasbyte

David

Hi Maureen, cannot help you there I did only 3 cycles of Velcade and got pulled off it, I had PN bad.

However the good news is I went onto Revlimid and at my last consultation, Friday last, I was told that “On Paper (i.e. my blood reading) I am perfectly normal now.

Kindest regards – vasbyte

David

Sorry to disagree with you Eve but AA is not a right. You have to establish with the issuing authority that you have a need for it. This is done by filing a very complicated and detailed form. The best people to fill this form out for you is a Macmillan adviser.

Sorry you have had to join us David but take the advice and get in touch with…[Read more]