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 Chris, firstly happy new year. I had my SCT beginning February 2013, took a while to get back to ‘normal’ but almost a year down the line and I feel great, I have had one stay in hospital for three days back in August with an unknown infection and currently have a nasty cold, but that’s it. I opted for no maintainance although I am still…[Read more]

Happy New Year to all, may 2014 be a good year for us all.
Regards
Tony F

Carol, firstly Merry Christmas. Re SCT it’s your decision but let me say that I had a SCT in February, not the most pleasant of experiences, but you can do it. It took a while to get back to normal, but now I feel great my PPs are down to 2. We have travelled abroad and spent time around this country. I now have 3 monthly appointments at the…[Read more]

Hi, almost the same as jeans husband I was 68+ when I had my stem cell transplant! last February. The only treatment I have now is a monthly penidronate infusion, visit the specialist every three months. So it can be done.
Hope your dad stays strong.
Regards
Tony F

Hi, I was told not to bother with taking supplements, just eat a good healthy balanced diet, veg and fruit especially. Told not to drink green tea!
The specialist nurse at the hospital should give you a diet sheet, my wife likens the diet to a pregnancy diet?
As for survival stats, ignore them, I guess we are all in the lap of the gods.
Did I read…[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,
So sorry to hear this, you are always so positive and I am sure your approach to this dreadful MM, will have you back in remission in no time xx 😉

Thinking of you, good luck

Love and best wishes

Karen
xx

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