Hi Stuart
Sorry to say the new look website still isn’t a great experience on an iPad. I very rarely use my PC or laptop now as all of my internet browsing is done via my iPad. The scrolling issue has improved since my last post. I managed to sign in today but when I went to the newcomers posts I was signed out! so could not contribute.
I’m not…[Read more]

Hi Stuart.
The new web site looks great.
Now the bad bit. – I find scrolling through the posts on the forum very slow and it’s very difficult to edit a post. I’m using an iPad. I haven’t tried it out in my PC yet though I will give it a go when I’ve dusted the cobwebs of that ancient piece of machinery.
I’m not blaming your work just wondering if…[Read more]

Hi all
Got this message from Becky Crowther via Facebook.

Andrew Godfrey please let everyone know in the our Dai group on Myeloma site that my brother made a speech today and he read out some of the beautiful posts from there, you were all mentioned and very much thought of today…all our love to you all xxxxxxxx

Hi Tom.
I already knew of your sad news via Facebook. I’m not going to tell you how everything will be ok and how great Velcade is because you know better than most, excluding the medics, the pros and cons of most treatments.
You’re one of the longer serving fighters on this forum and I wish you well in the next phase of your battle and that…[Read more]

Hi Mandy.
Just wanted to say I’m sorry your suffering so much.
There’s not much I can say in the way of experience as I’ve never had a SCT and never will. It’s a long story but a shortened version is I’ve not responded to the drugs.
The only thing I can think of is its something to do with the production of stem cells as I’ve read that causes…[Read more]

Hi Jeff
I was on pain killers for my back, very strong ones at times, but I stopped taking the stronger ones because I didn’t like the way they made me feel. So I stuck to paracetamol and oramorph. Post op I still get pain though it’s not as sharp as before where they operated. The trouble is my back has damage from top to bottom so if I’m not…[Read more]

Hi
I’m very sorry to hear about your dad’s problems.
Like Tom and David I was warned of the danger of dental extraction whilst on Zometa. I was told before any extractions I had to stop Zometa for 3 months and also not start again till 3 month post extraction. I was also given a leaflet to take to my dentist though she knew about it already. Your…[Read more]

Hi Carol.
My paraproteins started at 49 in Oct 2011 tried all the usual treatments and my PPs wouldn’t go below 35 I’ve now been on CRD for 22 cycles now and the lowest reading I’ve had was 12 for one cycle only I’ve been around 20 for most of the time. No chance of auto or allo transplant for me my last reading was 31 so movement to my next…[Read more]

Hi David
That’s great news David.
From what I thought I knew about Revlamid I thought it was a slow burner and it takes it’s time setting about its work. I’m sure it took 3 or 4 cycles and the introduction of cyclophosphamide before it worked for me. So hopefully your readings will go even lower.
Good luck

Every day is a gift
Open it carefully

Andy

Hi Jeff.
I can’t tell you wether partial remission is as good as it’ll get for you. I think 6 cycles is the norm for CDT and I think they’ll be trying Velcade to push your paraproteins down a bit further before going onto SCT. Velcade works well and quickly in most people and I’m sure it’ll get you to SCT if that’s the route you want.
I had…[Read more]

Hi Maureen.
I’m glad to hear Ian is out of hospital at last. I hope his wound heals quickly and you can both start enjoying a “normal” life the best you can.

Every day is a gift.
Unwrap it gratefully

Andy xx

Hi Dai and Chris
Dai is right I've been through most the standard and some not so standard treatments to no avail. My PP's stubbornly remained in the mid 30's. The criteria I was given at the start of treatment, when my PP's were 50, to get to SCT was at least a 50% reduction in PP levels. So that would of put me in the lower 20's bracket. Anyway…[Read more]

Hi Eve
Just thought I'd do a little update whilst I lounge in the sun by the pool 😛
I'm in cycle 15 of RCD now although it hasn't banished the MM it has controlled it for now. Thalidomide didn't work for me, well nothing worked for me, but Revlamid has dampened it down so there's no reason that it shouldn't have the same effect for Slim.…[Read more]

I had the pleasure of meeting Keith regularly, either at the day case unit or the local support group, and he was everything and more the person who posted here. He was bloody minded in his approach to MM he wanted to and did tackle it head on. He wasn't afraid to try new treatments or drugs but he knew the ultimately the damned MM would prevail.…[Read more]

Hi Ann.
Welcome to the forum sorry that you've had to join us.
I was diagnosed after 18 months of back pain. It first presented itself whilst training for the London marathon 2010 I was finally diagnosed Oct 2011 – 3 days before our wedding.
We returned from a short honeymoon to our first meeting with our consultant to be told myeloma is not…[Read more]