Well done Dai….I am so pleased for you.
And as daunting as it is, go out there and live life to the full. Hopefully with your positivity, you'll get a year or more of remission and I wish you all the best with that. Drug free time is a blessing once you have started isn't it….
Take care
Debs x

Hi Etta's husband (do you have a name? :-))
I hope she's got over the flu symptoms and that they were only from the zometa….hopefully she'll only suffer the first time too.
With regard to staging, I've never been told. To be honest, I've never asked as I've just focused on my pp levels. I think it is pretty normal so I wouldn't worry – it is…[Read more]

Hello Gill

its the rows that keep us going:-P
Regards to Stephen
Love Jox

Hi Eve
yes he did take me out for a nice steak and I do get flowers now and again
we manage to row a lot but we laugh a lot as well and thats important
Geoff doesn't plan ahead but he manages to remember at the last minute 🙂
but I do drop a few hints;-)
Regards to Slim
Love Jo x

Hello Ettas Husband
When I had CDT i felt terrible all the time I was on the DEX no sleep but tired all the time it also makes you very irritable or it did me so bare with her if this happens I wasn't
sick which was lucky my consultant also said never mind about what stage I never did find out. I didnt have zometa but premidrinate same sort of…[Read more]

Just thought I'd give you a quick update after my appt with the pain clinic. It is quite a frustrating story!!
I went in, and after listening to him talk over me constantly, he decided to put me onto pregablin as I had been on it by mistake pre-transplant (along with tramadol and morphine – not meant to be given together!)and it had worked then.…[Read more]

Hi Keith,
I would check with your hospital, but when I had a rash around my neck and collarbone post SCT, my consultant said it was GvHD and that it was a good sign that the transplant had done its job.
Mine has just about stopped now….I am 2.5 months post transplant.
Hope it calms down soon so the swearing can stop 🙂
Take care
Debsx

Hi Wendy,
I hope you're doing ok post transplant….it's hard in those early weeks so bear with it and don't rush to getting back to normal. It's really important you listen to your body!!
As to the mini Allo, you could post on the Under 50 site as Ian has recently had one of those….in June I think it was. He is doing well so far.
That must…[Read more]

Hi Terry,

Just to say that velcade definitely isn't a last resort. I was diagnosed in 2009 and started treatment in 2010. I started on revlimid but that stopped working quite quickly and I was put onto velcade.
It worked really well for me and brought my pp down from 28 to 4 at which point I had an SCT. The only thing I would say is please…[Read more]

Hi Etta,
Welcome to the site….sorry you've had to join us.
I reacted to zometa the first time I had it – felt very flu like with bone ache all over, hot and cold etc. But it only lasted about 24 hours and since then, I've never had it.
But the tiredness etc is probably due to the CTD….my best bit of advice is to listen to your body. If it…[Read more]

Gill and Stephen

so sorry about the news I know your not quiters this next treatment may be the one we all have to fight, fight to live I know stephen does that all the time keep your chin up
Love Jo

Hi Terry

so sorry you have had to join this group I cannot help you with velcade as that will be the next drug i am put on when i need it I like you will be looking for advise I have been lucky so far no tumers but I have had chronic renal failure due to myeloma
Love Jo

Great news David and long may it stay that way you are doing so well at the momement;-)
Keep Well
Love Jo x

HI Eve

glad to hear you and slim are both reasonably ok decorating YUK not my favourite thing I hate all the upheaval but its good when its done
Regards to Slim:-)
Love Jo

Thank you bridget david and lorraine for your kind wishes
David my marriage journey is the same as yours except the renueing of the vows we havnt done that yet
Keep well everyone love Jo;-)

thank you Jean I will let you know how I get on
Love Jo

hello Peter

glad you joined the group it was very encouraging to hear your news
I too get very nervous every time I go to clinic its like having the sword of damaclese hanging over my head I am due to go tomorrow, I was diagnosed in Jan 2009:-(

Keep posting and keep well
Regards Jo;-)

Dear Jean and Dia
thank you both for your kind thoughts lets hope we can have lots more celebrations

Love Jo

Good News Gina

so glad your mum is reponding the blue badge will help her get around a bit better give her my best wishes 🙂

Love Jo