Hello Wolf

It seems you have been doing very well on Revlimid and a low dose of DEX I always wonder if we need these massive doses of DEX they seem to give us
did you have a SCT at any time in the last 8 years
thanks for posting
Love Jo 😉

Hello Christin
So sorry to hear about your dad hopefully the hospital will get on top of his pain as you will see from posts on here there are lots of things to help
also the Velcade some people respond quicker than others but if that doesn't work there are are couple more options for him.I had a rash with my initial treatment it turn out to be…[Read more]

Hello Bridget

are you ok how did you get on at uch is the revlimid working for you
much love jo xx

Hello Min

So sorry to hear about Peter he is going through the mill lets hope all this leads to his second SCT you must be exhausted are you getting any help at home with dogs etc if you are at the hospital all day.He is in the right place though because a bad chest infection could lead to pnuemonia so its good the hospital have got it all in…[Read more]

Good to hear your treatment has worked good idea to have a holiday it will set you up for the next SCT really good luck with that
Love Jo:-) x

Oh Roz

your suffering as much as the rest of us I do wish I had a magic wand to make ir all go away you must miss micheal so much you was with him such along time my prayers are with
Love Jo:-)

Another good one Dia:-)
love Jo 😉

Roz

glad to hear from you I hope it is not too much of a struggle on your own
what sort of disability do you have can you get more care in your home for your needs please keep in touch
Love and prayers Jo x

Hello Jess

I am not sure about coming off dialysis they told me it could be possible when I was diagnosed I had a GFR of 10 nearly went on to dialysis but had a slight improvement possibly due to the high dose of steriod I now have about 20-25% kidney use so your mums kidney could improve enough to avoid it i was 61 when diagnosed

Love Jo x

Wonderful news HURRAH what a day, you must be so relieved even with a bit PN as for the 8.3 I have not been above 10 since I was diagnosed I have sort of got used to it although 10 o'clock at night is my witching hour had it by then, went to the renal clinic today kidneys still stable so that was one worry over for another month i always get…[Read more]

Hi Eve
Dont you wish you could bosh some people i did try to say something else but i swore and they would not pA:-( ss the post GRRRRR!!!

lOVE Jo x:-(

Hello Colpot

that is a brilliant response 41 courses how many years is that a lady inmy clinic has been on it for three years like you she has a reduced dose now
fingers crossed this keeps working for you all

Love Jo:-) 😉

Hi Claire

It is all confusing but hopefully this site will help you ,your mum is doing well if she was diagnosed in 2009 give her our best wishes
Love Jo

HELLO Bridget

I am so sorry your pain is so much worse I cannot really comment on pain killers as I can only take paracetamols or have accupuncture.
Could you have some more RT treatment is that possible as it helped a bit for you last time
Much love Jo x

Hi

I agree with Dia sorry your post got lost dont be a stranger you will find this site so valuable Try the myeloma uk help line they will be able to talk through a lot of your problems
Love Jo

Hi Min
I have acid reflux it can be awful i take a small dose of omisaprol daily which seem to hold it in check if i do get it srange as it will seem all i want to eat when i get it is heinz tomato soup i seem to be able to tolerate that.
As for hair loss my husband lost his naturally he hated at first but now he is ok with it his brother who is…[Read more]

Hello Min

How you can think to write so much in one go is marvellous I am glad to see it looks like the thalid is starting to work for Peter lets hope he gets a good long term result this time 🙂
Love Jo x

Hello Eve

How is slim doing now is he feeling any better and putting on weigh and back on the treatment it a shame we have had such bad weather because a drop of sunshine would probably do him good
Love Jo x

Hello Jane

I took thalidomide as part of the CDT regime I found that if I took it last thing at night and the steriods first thing in the morning I managed to sleep most nights I am afraid constipation seems to be a common theme with any of the treatments I found prunes and figs helped but some times had to resort to movicol which can be given…[Read more]

Angelinax

Nice to hear from you I am glad John is feeling much better perhaps you will be able to get him home soon and back on track

Lots of love Jo 🙂 😉