Oh Nicola how unbearably sad for you all, stay with him as much as you can over the next few days. I do hope you can get him home. It has been such a short time for him, such aggressive disease. I am sorry
Thinking of you
Love Helen

Hello Nicola
Hope your dad has improved when you see him next and you manage to look after yourself too. I've been on the lenalidomide for a few months now, both pre and post transplant. I'm a bit tired and had a few recent infections but it has worked well for me so far, I'll keep my fingers crossed for your dad.
Helen

Good luck with the treatment Andy
Love Helen

Hi Andy

sorry the meds have not worked for you so far thats a bit od a bummer I have not heard of the regime you are about to start but i wish the the best of luck
Kind regards Jo

Dear Terry, Fadia and Mavis
I'm very interested to hear what you have to say about this but please remember that when you are in the watch and wait group, while it is a time of great uncertainty, it is not the same as being told that treatment is needed to save life and prevent major organ damage.
When I was told that I was at end organ stage,…[Read more]

Hi Paul

IT took me a long time to get Slim to claim benefits,his thinking, was he was retired.he would not get anything.
All though it was costing us a lot of money on petrol, parking,and general things that I would not normally buy,all his clothes were to big for him,plus lots of extra washing,not to mention the carpet that was ruined.

I…[Read more]

No Dai you are not wrong I put my previous post just after yours! So there must be a gremlin somewhere. How are you doing with the revlimid?
Love helen

Hi Mavis and Tina
I am on the myeloma xi trial and had the revlimid instead of thalidomide – they are similar drugs. I'm back on the revlimid as maintenance after transplant and it still makes me tired.
The dex gave me sleepless nights and a few days of sleepiness and low mood after it finished, (you have four days on then a few days off it.)…[Read more]

Hi Mavis
Lets hope this is just a blip and your BMB and your test comes back negative,Giving your condition you will not go on the intensive pathway,so should have a break in treatment.Slims has injected himself for over 6 months,because of blood clots,so you will soon learn

He did not loose his hair,but it got very thin,and blocked plug…[Read more]

Hi Shirley
Just replied to a post on treatment you might be able to answer a few questions???? sorry to put this on you .Eve

Hi Penny

First may I say I cannot help you,but I have replied to boost you up to the top again ,otherwise some post get lost

I think I am correct in saying Shirley has had one from a sibling and there are a few people in the process,I know Shirley does not post much,so look out for a girl in a cowboy hat LOL.I think she is based in…[Read more]

hi Chris

glad you are doing well and your PPs are coming down all be it slowly congratulations on your forth coming wedding I know St Audries its a lovely place:-) I hope you have a wonderful day Keep well and strong
Love Jo x

Hi Chris
Congratulations on your forth coming wedding,you can say one thing about this B—-y Myeloma,it does put every thing into perspective.

Slim and I lived together for 30 years decided to get married before mm came along just never got round to it,finally set a date,but never made it as he ended up in ITU,so are marrage took place in…[Read more]

Hi Andy
Thanks, sorry I didn't spot you there and it was good to meet you too Keith. It was my first info day too and I was surprised at how much I enjoyed it
Love Helen

Hi Chris
Good to hear your stay in hospital was short and treatment progresses, look forward to seeing the wedding photos
Helen

Hi Tina
Fluid is a must,I have the same problem getting water down Slim,I bought 2 plastic jugs with lids,and fill them up with week juice,and put in fridge,Slim found it easier to have a small glass,so kept it filled up constantly,he went through a stage of fizzy drinks,my attitude was anything that goes down,you will find your taste alter all…[Read more]

Hi Sue
So many years of fighting for drugs,again like Bridget it seems so unfair,I am amazed at these criteria they have,MM patients lay them selves out to become guinea pigs ,and they get choosy who they take,are MM patients part of the grand scheme or just a by product to be disposed off if you do not meet the criteria.
Sorry I sound so angry…[Read more]

Hi Jo and Tom and all

Frank says to tell you to add guinness to the list!!!

Love jean xx

hi Tina

I was told 2/3 ltrs a day the more the better and yes it can include tea squash not much coffee for me as i have damaged kidneys also the odd glass of wine is ok if you have some water along side kidney specialist told me this I prefer red myself!!:-) 😀
Good luck Jo x

Hi Bridget

I have just read your post and I just don't know what to say. Others have said Bridget but you are an inspiration to us all – your courage, compassion and your love of life. I will pray that they come up with something you can try. My love and prayers are with you.

God bless
Love Jean xx