Hi Aileen
Just popped into the site, saw your post and wanted to say welcome but really sorry that you find yourself needing to join us.
I have found this site to be a huge support and there is always someone who has had experience that they are willing to share with you or perhaps talk over what options etc.
Sometimes, I have even found…[Read more]

Hello Alexis

Just wanted to say welcome (but obviously sorry that you need to be here).
I too am on Revlimid and am always interested to share experiences with others who are also using or have used Revlimid.
Best wishes
Carol

Hi Jo
Thanks for the information,will ring and find out how late I can book it,and check about parking.If problems with parking Slim will not be able to come,as he cannot walk or stand for any length of time.
Also not sure how he will be,1 week of 4 cycle,has hospital on Friday,I might go on my own,It is easier to go by train then tube,but there…[Read more]

Hi Dai
4.21 am,and your creative demons,are all around you,to be able to express living and death in such a powerful way is a wonderful gift ,I think you have expressed my thoughts on life ,but put it in a nicer way than I can:-)
May be they are not demons but angels,your not ready to jump on the cloud yet.

When I read this my thoughts turned…[Read more]

Hi Sarah,

I am reminded of a simple ditty spoken by Bilbo Baggins to Frodo in the first of the Lord Of The Rings Books when Frodo is about to start his epic adventure and Bilbo is quietly reflecting back on his life.

[b]Bilbo's Song in Rivendel[/b]

I sit beside the fire and think
of all that I have seen,
of meadow-flowers and…[Read more]

Gill

wish Stephen all the luck for his op lets hope it all goes smoothly We have been called into our surgery for the flu jobs so our lot are on the ball
Regards to stephen ps i CANNOT SPELL FOR TOFFEE
Love JO

Hello Scott

just to mention there is a really interesting article on the web look up Sodium bicarbonate and cancer treatment it a good read
Regards Jo

Hello Ali

my renal Doc seems to want to keep me on the high dose of sodium bicarb
so I will have to keep rattling for now as for the bone food they put me on a low dose of premidrinate just 30mgs once a month I dont seem to have any problems withit. We had a good holiday in Scotland with only two days rain in two weeks8-)glad you had a good…[Read more]

Hi Gina

glad you enjoyed the info day I have found them so informative and my husband who is my carer got a lot out of the day we are going to the London one in October
Hope Mum is ok:-)
Love Jo

Hi Eve

Hope Slim is doing ok just to let you know the next info day In London is this October if you could make it

Love to Slim
Regards Jo

Welcome Alexis and John
glad you have found time to post you are very welcome please tell us about your and Johns journey we will all be interested:-)
Love Jo

Hello Aileen

sorry you have had to join this group but welcome you will find all the support and help on this site you amy find it a relief to talk to other sufferes as not many people in the big wide world have heard of it.
Dont forget the Myeloma uk help line they are brilliant:-)

Keep well love Jo

Hi Gill,

Please wish Stephen an uncomplicated op with a quick recovery from me.

We have been given a general 'drop in' day for our 'Flu' jabs and I will certainly be there for mine. Janet had 4 'colds' of varying degrees last year and apart from one slight snuffle they seemed to pass me by… which I put down to my jab. People with…[Read more]

Hi Paul,

Basically there are 2 types of Myeloma… Heavy Chain (normally associated with Paraproteins as a measurement of the disease) and Light Chain Myeloma (also known as 'Bence Jones' Myeloma and generally associated with Kappa Light Chains for measurement of the disease). Heavy Chain is the more common of the two but apart from…[Read more]

Hi Helen

Its only some time that it still leaves a "Pencil Tash" other time its Normal.

And Yes I had a sore mouth but was nearly all cleared up about two weeks a month after SCT:-( which in itself wasn't that good but was still off my food and that helped.

as for the hair loss all I had left was my Eyelashes and that was it :-0…[Read more]

Your More than welcome Alexis, and you can Tell John I also am too shy :-0 to post (aint i fellow members )
And when you get to the "who the heck are you" just nip in and let me know who i am lol.

Tom "Onwards and Upwardfs" xxx

Hi Eve, we don't go to the support group as the nearest one is Bury. So this website is a godsend. Like you said it gives you a bit of hope going to see others who are going though mm and how well they are doing. Mum isn't too bad, still very shaky and cant get out and about much. She had her bloods done on Friday and is at the hospital on…[Read more]

Hi Ivan, my mum went down to 19 when she was having treatment and i think they called it partial remission she did really well and didn't need treatment for another 12 months because of this. 6 is a really good number.
Take care
Gina x

Hi Alex I am on my 7th cycle of Revlimid and exhaustion has been a constant throughout It seems to be a very common problem too!! All I can say really is go with the flow and when John feels he needs to rest then thats just what he needs to do It didnt take me long after being diagnosed to realise that there is no choice but to listen to my body…[Read more]