Sorry you've had to join us Tom :{
If the Myeloma's not really having any harmful effect as yet, why are you having a SCT so soon? This is a very individual disease as I'm sure you know (or will come to know) but I was asymptomatic (no symptoms) for 4 yrs and wanted to put treatment off for as long as possible. I have spine damage but I'm on…[Read more]

Hi Mike,
I was also 19 in 1989 so we're about the same age. I've got 2 young kids who I also adore. Myeloma certainly knows how to pick its victims.
Do you think the impact of the accident triggered the Myeloma? They say a "shock" is often the trigger. With me it was probably giving birth!
6 months later I had excruciating knee pain and…[Read more]

Hi Peggy, I went through it at the beginning of the year and yes, the GCSF injections are the norm I think. Good luck with the harvest and everything that follows.
Sharon x

Winston!
We met at the Birmingham Infoday. Sat at the same table for lunch (and very nice it was too!)
I was sorry to hear you'd relapsed after such a long time but you're an inspiration. I'm quite a negative thinker and need to hear about more people like yourself, who've done well from their first transplant.
I had my transplant in January…[Read more]

Rachel, I'm so sorry for you and your family. I was at the Infoday on Saturday when I found out about Paul and I have to say I was shocked and deeply saddened. We were at more or less the same point with our treatment. I had my transplant in January and came very close to losing my life. Paul seemed to be doing so well. Damn this disease.
Wish I…[Read more]

Bit miffed to read that some of you are finding it difficult to claim benefits. Please contact Macmillan for advice. They sorted things really swiftly for me and at 41 I qualify for full DLA and have a lovely new Motability car. I never thought for a minute I'd qualify but apparently I DO. Living with Myeloma isn't easy whatever age you are. If…[Read more]

Hi Sarah. I rarely check in on this site nowadays but saw your post this morning and felt I should reply. I had my SCT in January this year and have been struggling with illness ever since. I came home from hospital after my transplant and had to go back in less than a week later with a blood infection. The day I was coming home I developed an…[Read more]

Hi, just an updade after my meeting with my consultant today. It's a differnt member of the team I see for my reviews and although very nice, he's just not been listening to me and telling me I have no option but to put up with it really. Well my consultant was a little more sympathetic, checked the protocol for the trial and has altered my Dex…[Read more]

Thank you Min and Bridget for your replies. I really appreciate it. I gave Ellen a call today and explained how I felt. She suggested I bring forward my next appointment with the doctor and discuss other options regarding treatment. I do feel like I'm being weak but then again why be a martyr and suffer? I'm also terrified that if I do go down a…[Read more]

Hi, I'm not that familiar with this site since it all changed and not sure if this is the right place to add my post but it is relevant to Thalidomide.
I'm on the Myeloma XI Trial and got "picked" for Thalidomide as part of my chemotherapy before my SCT. I'd been asymptomatic for 4 years but my PP levels had crept up to 59 and I was anaemic along…[Read more]

Well I'm so sorry to hear about everything you've all been through with the loss of your Dad and the substandard care you feel you've received. The reason I'm at Sheffield is because I wasn't happy with the level of care I was getting at Doncaster and I have to say, despite a bit of a trek, I've been very happy with Sheffield so far.
I do…[Read more]

Just what I need to read after getting the call to go into Sheffield for a few days for a BMB, Zometa and the Myeloma XI Trial. Myeloma effects us all differently as do the drugs we need to take to fight it. I haven't the time to write much now but I've felt increasingly wobbly over the past month or 2 and the time has come for me to take that…[Read more]