Hi Fi

My mum has myeloma diagnosed in july 2009 at the age of 64, I was told then that they dont stage this type of cancer anymore…not quite sure why.
I just wondered why you feel that you cant talk to the consultant? My Mums is fabulous I just make an appointment and he answers all my questions with such honesty, I am also in constant touch…[Read more]

Hello Ali

just wanted to say hello and welcome you to the site……as i say to all the new comers you are not alone, and we all try and do our bit to help.

with much love michelle x x x

Hello Marian
Just wanted to say hello and welcome to the gang, I dont get on here as much as i would like, but do try and keep upto date and read the posts…..its really hard when you first get the diagnosis, My mum was diagnosed in july 2009 at the age of 64, we have had numerous problems, but mum is still here to tell the tale. You have had…[Read more]

Dear Susan

just to say that my thoughts are with you at this very sad time…..cant believe that i have not been on here for a couple of wks and then found 2 very sad posts.
with much love michelle x x x

Dear Tina

I have just read your post and just wanted to send my love and my thoughts are with you at this very sad time.

with much love michelle x x x

Hi mike. I,m not surprised that you took some time out…there's a lot to take on board at the start. I'm glad to hear it's all started off ok though! I'm now on velcade but have a feeling it may not be respondig much now. Got 3 cycles from revlimid and looks like it could the same with the velcade. Find out more in a couple of weeks. How did u…[Read more]

Dear, dear Tina,
I have only just come online and read this and wanted to say just how very sorry I am for your loss. When I met you it was so apparent what a strength and support you were to him throughout your journey with this disease. My thoughts are with you and your family so much and I hope and pray you have many many happy memories of him…[Read more]

Hi eve

Just wanted to say firstly to keep strong with slim and remember all the experts you have working with him. He sounds like a fighter too so hopefully you'll look back on this in a month and wonder what the worry was about …I hope so as you're v inspirational people!
As to the complaint , I'm with Tom…..would take awful lot for me to…[Read more]

Ah Sharon,

You'll be fine hon. HOw come you have to go in for a few days though??? Remember to call me if you need anything at all….even a rant!!!

Take care. Lots of love
Debs x

Hi Sheff,

Like the others on here, I am so sorry to hear about the loss of your father. I think it hits us all hard everytime that we hear of someone passing away, but it is even harder when you know that the family have suffered so much with the way it has happened. All my best wishes are with you and your family over the coming weeks and…[Read more]

Good luck from me too Dai…hope you manage to persuade him….I'm wondering about asking Prof Morgans team when I go in next week as I already have PN from velcade…mildly I think (numb feet, and now slightly painful calves and arm muscles!), but I'm only on cycle 2 and you don't normally get anything till cycle 3 plus.

But I think I know the…[Read more]

Thats fantastic new Gill, big hugs and loves to you both.

with much love michelle x x x

Hi Joe
You are going through a really rough time at the moment, but you have come to the right place for support. I have 2 children one is 18 in August and the other will be 14 in June. To be honest with you i would be devastated if my boys didnt come to me when they had a problem. I see that you have already been to the doctors, have you managed…[Read more]

Aahh, Gaye,

So sorry to hear that the pain is still bad for you. Must be so hard….bad enough dealing with the damned disease anyway, without that on top of it all. But I am really chuffed to hear that all is going well with the pomalidomide…that is good news!

And just to join the…[Read more]

Hi Jonny,

How are things going with you? Hope treatment is going ok and you're not suffering too much.

Just wanted to catch up and check in on you!!!

Debs x

Hi Mike,

Just thought I'd see how you were doing as you must be into your second week of revlimid now? How has it been? Any major side effects? Meant to mention that your taste will probably go up the spout…but you probably know that by now! I remember my consultant saying I could have a glass of wine if I wanted but that I wouldn't…didn't…[Read more]

Hi Andy

Sorry to hear you got the diagnosis so young. I was 34 when diagnosed in 2009 and felt like it was really unfair!!
Hope you're being looked after well…think you'll like the under 50 site though if you email Scotty!!

Debs x

Hi Keith,
How are you feeling about the transplant? It's good to hear that the velcade has worked for you…it seems to be doing the same for me, so I may not be far behind you with a transplant date!

Bridget is a gem isn't she….most definitely one to count on and we shouldn't forget that! And I'm really sorry if you felt that none of the…[Read more]

Oh Bridget and kay,

So similar!! I've gone up 1-2 dress sizes no matter what exercise I manage to fit in on the odd good days I have. And whilst I eat, I don't feel I overeat massively….occassionally yes (it is that taste thing isn't it Kay….awful!) but not loads. I am hoping some of it is water retention.

And like you Kay, everyone…[Read more]

Just a quick update for anyone who is on the Myeloma XI trial/ interested in Velcade treatment.

I've just finished the first two treatments of cycle 2, and got my cycle 1 paraprotein results back….have gone down from 27 to 15, so I am over the moon, especially as my consultant had warned me that I may well not see a decrease in the first…[Read more]