Hi Vanessa
Welcome to the forum.
When I was first diagnosed my PP's where 49 and I was told a 50% reduction was the minimum needed before a SCT could be contemplated. Unfortunately it took me a year and lots of different treatments, CDT, PAD, DTPace and now RCD, before I achieved the minimum required resulting in my bone marrow being well and…[Read more]

Hi Grayham
Welcome to the forum. Although none of us wants to be members you'll find it's a very friendly and welcoming forum. No question is too daft or trivial – so just ask away.
My history is I was diagnosed in October 2011 after approx 18 months of back pain. Unfortunately my MM has proven to be a challenge to the medics and the drugs. My…[Read more]

thanks vicky and colin all the best to you both

hi Tom since speaking with you ive had loads of positive responses thanks for opening the door to me have a great day

hi chris
i found a forum site thats for amlyiodosis suffers but im gonna still keep the link with everyone here i knew something was not right with my body in June and the doctor was so good and quickly investigated they were so quick with everything and sent me to London where it was officially told what disease i had so im glad i know but…[Read more]

hi mothas
thanks for replying yes its good thank you whoever set up this forum god bless you
i really thought the desease affected only women until tom wrote me so im learning more each day

hi pat thank you for the kind word sand support its so good to know that i can finally talk to others who have the similar understanding and feelings about this disease in been battling for a few months and since i went to London royal free hospital for my first visit its made me more confident to share this
i think that everyone i have spoke to…[Read more]

thanks tom wow you sound so positive just threw those words of encouragement you've made me feel ten times better thanks for that yes im gonna find out if there is a support group in my region

Hi Keith it was good to catch up with you yesterday. It's always good to see you. Though obviously I'd prefer it to be somewhere other than the day case unit. I hope your transfusion went ok and your energy levels start to pick up a bit.
Patrick was having trouble keeping his HB's up and he like you was having regular transfusions. I hope his…[Read more]

Hi Vicki & Colin..
Hope you both had a good Xmas and New Years.
Glad to see Colin is recovering nicely post SCT but don't let him do too much. Obviously I don't speak from experience but from what I've read 😉
We really hope this year will be great for you both and you get to enjoy yourselves. Holidays, parties let the good times roll :-D…[Read more]

Hi Helen.
Just seen the photo you posted 😀 looking good.
Hopefully you are feeling good too and had a good Christmas and new year.
I see you are having trouble with food re Revlamid I don't find it a problem. I have a problem with cyclophosphamide putting me off food and making me feel nauseous. I have 3 courses of cyclo. per cycle and my…[Read more]

Hi Megan and Phil

I've just read this post for the first time and wanted to say Welcome Home Phil. It made me cry reading the post, just because it brought back memories of the journey that Nick and I went through 18 months ago. I remember so well, those first steps outside of the hospital room and what a HUGE achievement it was 🙂

As…[Read more]

Hi Deb,
Welcome to the site and I hope you find it as useful as I did….it got me through the first weeks and months after my diagnosis.
I would echo what Lorraine has said above. It is scary in those early days when even the terminology sounds scary! But it does all get easier. I smouldered for a year, then went onto the Myeloma XI trial where…[Read more]

Hiya there..

I am really sorry to hear of your diagnosis but please don't lose faith. My name is Kerry, it's my partner Melv that has Myeloma. He is 39 years old.

Myeloma seems so complicated doesn't it? So hard to get your head around but there is so many treatment options as I'm sure that you have found today.

How did your appointment…[Read more]

Hi all
I can't add much to the zometa flu debate other than say to date I haven't experienced any problems after my infusion. I have it infused over 15 mins.

Take care
Andy

Hi Dai
Well you just escaped in time! Steph and I arrived in Nottingham earlier – Saturday afternoon – only a 10min walk from city hospital. Steph said "Dai's in city hospital message him to see if its ok to visit" but when I came on here I saw you went home Friday. Never mind – it's good your home.
Hmmm Dave and Top Gear that's what I was…[Read more]

Hi Keith.
It was good to see you at the day case unit Friday. Sorry I couldn't stay longer for a catch up. We were having windows replaced! Your platelets are very low but at least your neutrophils are good – I thought I was doing well with my neutrophils at 1.9 My potassium is low again so I've got those awful tablets to take again. Well I…[Read more]

Hi David.
Good news your going to be drug free over Christmas and for your birthday. I seem to get another new drug every time I see my consultant my latest addition is an antiviral.
Have a happy Christmas a healthy new year and a wonderful birthday David

All the best
Andy