Kay

good luck at the hospital dont worry too much about the hair the shaven look is all the fashion I hope all goes really well for you and the Velcade knocks this devil out. When I had chemo my hair got really thin so I had it cut really short more in a boys style left it that way will save time next time always been a bit fat so not much…[Read more]

Hello Peter
This method is widely used in America it sounds a much better system
I have a friend who attends a local clinic with me in Stevenage she is on velcade at the moment she asked the consultant she sees who is the head heamotogist about having this method she said that she had never heard of it!!! thats a big worry,as it happens we are…[Read more]

Min

You are brilliant dont know how you cope especially with not much sleep you must feel you are going up the wall at times I know what you mean about 4.30 in the morning if I wake up then my mind goes barmy well perhaps I am barmy!

Love Jo 😛 xx

Dia

what is a good night sleep since I have been diagnosed with renal failure I have to get up twice some times three times a night can get off again some nights but others its tossing and turning for hours I get three hours good sleep then it all goes to pot but at least I am not on dialysis, keep drinking "THE WATER!"
lOVE jO 🙁 😉 X

david

great news keep up the good work 3 months off wonderful and the para result is good too enjoy your holiday and lets us all know what it was like on the Rhine;-)

Dia
songs in the key of D sounds like my kind of CD get Janet to hurry up and edit
PS i am sure you have loads of fans
Love Jo xx;-)

dia
i agre with what you said to Roz wise words.
When is your cd going to be issed
Love Jo

Hi All

after reading these posts the old program your life in their hands come to mind it makes me shudder when I hear these tales. My GP sent me home to take paracetamol "you have a virus" I collapsed next day my husband took me straight to hospital with double pnuemonia and renal failure. They all seem so callous about it why did some become…[Read more]

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

Hi there.

I have been on the same trial and got randomised for the velcade too. I had about 4 cycles and then was stopped as I've had neuropathy since the beginning but it started to get worse and they wanted to stop. BUT, it has had good results and got my pp down from 28 to 8 (possibly less but they forgot to take the reading last tuesday so…[Read more]

Aaahh, you've all made me blub! Angelina, I have a 4 year old and a 6 year old and am about to go in to have a SCT. I know it will be fine, but I have been thinking about doing memory books, scrapbooks and things too…I think they are wonderful ideas….I just wish my hubby was quite as supportive…..it's the one area I wouldn't be able to get…[Read more]

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]