Dear Sharon

So sorry you are having such a bad time. Having RT isn't easy when you have such a bad back, even when it is to help things long term.

Before i had an op to remove a plasmatoma from my spine (T12) I was also bed bound, being hoisted onto a badpan is great fun!!! The strange thing, I found, was that after I started taking…[Read more]

Hello Angie and Clara

Welcome to this site which I have found so helpful. I am sure you will too.

Best wishes to your Mum, Angie, and I think it is your Dad, Clara.

Blessings.

Mavis

Ooops!!
Thank you, Min for starting this thread.
It is nice to hear about everyone else as it makes me feel more 'normal'!!

Hi Elizabeth it was that clever Min that started this post I am so glad she did its lovely to hear about everyone !I am so pleased you still like your hat and even more pleased my sewing has held up!!Have a good weekend love Bridget x

Hi Sharon well if you do go there you will be in good company !! 5 sessions sounds promising , I hope they let you home soon afterwards . I have been impressed with the results of my rt , the pain isnt constant now and can disappear for a couple of days at a time , I can cope with that! There was an excellent piece on radio4 the other day( see I…[Read more]

Thank you for starting this thread, Bridget!

I still wear the hats you sent me in the summer although now my hair is starting to grow!

My name is Elizabeth from Bournemouth

I was diagnosed about this time last year after excruciating back pain which was caused by 3 vertebrae collapsing. Luckily my GP sent me for blood tests after a week…[Read more]

Dear Sharon thank god you knew to insist but what a heck of a shock!! I was in the same position when they eventually diagnosed me and its so frustrating not being able to move independently , I feel for you. I remember them coming round and checking the reflexes in my legs every few hours as they couldnt understand how I had been walking around…[Read more]

Hi everyone, great idea Min ! My name is Bridget I was diagnosed with mm in 2006 after 3 vertebrae disintegrated. I had a spinal reconstruction and am now known as metal micky!! I had an sct in 2007 which gave me 18 months partial remission. I was then on the Myeloma X Trial which gave only a short break This time round I was on velcade for 3…[Read more]

Hi david

I'm very glad you opened this thread because for all my reading i can't make sense of the different readings. My Consultant just gives me the para protein level and I was just told, when originally diagnosed, that my bone marrow just showed traces of protein. I have been trying to make sense of all this – especially as I read the…[Read more]

Hi Gavin

I was very interested in your decision to go ahead with treatment. I can imagine it was not easy to decide being in not too disimilar position.

From all I read about the dreaded MM it seems the important thing is to make the decisions that seem right to you. It is good that you have got onto a Trial as you will be very closely…[Read more]

Hi Colpot what a brilliant post , very encouraging for people like me who have just started on Revlimid. thankyou . Long may it continue perhaps you should go for a world record!! best wishes Bridget

Hi Gavin thank you for letting us know . In my experience you get very well looked after on these trials so fingers crossed it will be trouble free and you can have your sct and be free from major treatment for a long time . I have just started on Revlimid and the lovely dex !! A few unpleasant side-effects this week but I am hopeful it will…[Read more]

Dear Gaye I am so glad you have got a date now , at least they can start to relieve your pain and hopefully it wont be too complicated. For most of the time now I dont have that awful pain , it does come back for a few hours at a time but its not constant and I can deal with it Havent seen any daffs yet but its definitely milder and brighter , at…[Read more]

Hi Jen and Keith the disappearing veins are a problem for me too and in fact it is the one thing that can reduce me to tears! At my hospital they use PICC lines, these are a fine tube fed through a cannula in your elbow , up tp tour neck and then down to a major vein in the chest It is completely painless , being fitted and removed , only a small…[Read more]

Thankyou for making me laugh out loud!! Hard to believe but even harder to keep a straight face Hope you have a good day love Bridget x

Dear Min I hope you enjoyed your birthday and now you are officially allowed to grow old disgracefully !! You can now wear outrageous hats, jump in puddles , talk to yourself and answer , in fact anything you fancy ! Of course the men in white coat may come after you !! As for men in white coats– Sacha could definitely charm me into feeling…[Read more]

Hi Keith really good to hear you and Velcade are getting on so well Long may it continue!! love Bridget

Hi Clara welcome to our merry band . At the moment you must be feeking so overwhelmed with it all but it does all become clearer. My advice would be not to google everything but take it one step at a time Myeloma is such an individual illness andthe descriptions of stages etc on the net are very often outdated now Newer treatments are emerging all…[Read more]

Hi everyone my diary was given to me by my specialist nurse perhaps yours may have some of their allocation love Bridget x

Hi Angie welcome from me too , you really have found the right place for answers and support .Even if your mum and dad arent up to reading up on myeloma yet they will be glad of your support As Min has said it does get easier to understand as treament gets going and the initial shock wears off. In the beginning it seems to take ages for treatment…[Read more]