My vertebra fractures and bone pain resulted in a whole year of inactivity. By the end, when SCT and vertebraplasty had got me on the move again, I had quite significant kyphosis – couldn't lie down on my back at…[Read more]

Rather than further hijack this thread, I'll open a new one on "Back exercises"

I encountered two similar tricky questions on insurance forms

1) is my myeloma in remission?
My nurse basically said if its stable and below its peak, then it's remission – even if that is a PR or VGPR, rather than CR

2) am I waiting on further diagnostic tests?
Well in always waiting on tests, but I figured that…[Read more]

As a result I have had quite pronounced kyphosis. The pain in my vertebrae was reduced a lot by…[Read more]

It's not an easy experience – but not impossible either. 2 and a half months on, I feel very good – certainly better than I did on chemo alone – and…[Read more]

I've really struggled to keep up my family commitments (being honest, I couldn't) for much of the time, primarily because of problems with my back. I fractured at least 4 vertebrae and was in a lot of pain, much better since I have vertebroplasty in February. The family…[Read more]

Do drop an email to Scotty or Phil to hook into the Under50s…[Read more]

I'm awaiting kyphoplasty and SCT in the next few weeks myself – I clicked on this thread for information about kyphoplasty.

I don't know what to say. I didn't know Glenn, but I know what he's been through and I feel like everyone with myeloma is my brother or sister.

I was so sad to read your post. My thoughts are with you, and…[Read more]

My light chain measures were 1,300 at diagnosis – which was causing me tremendous bone pain, multiple fractures, anaemia and low neutrophils. Now, at about 600 I seem to be nearly asymptomatic.

Goes to show that…[Read more]

Thanks. Yeah, I was a bit gutted when I realised what was coming – and it's such a massive disruption, aside from everything else. But if it can keep me feeling healthy for a good period of time, then it will easily be worth it. The quality of my life the last few weeks – compared to what it was like in the autumn – is…[Read more]

Just hang in there through the ups and downs of the DEX. Personally, I found it got easier each time – not to say I wasn't glad when it finished, but nothing compared to my experience in the first 2 cycles which I thought, at the time, were…[Read more]

I'm 39 too though my symptoms have been different from yours – my kidneys are ok, but I've had a lot of problems from bone damage. I've been on velcade and dex for months (and doxorubicin too) – they're manageable though you have to learn to ride the side effects.

Take all you meds. People die of infection because their myeloma and…[Read more]

Yes, I too have had endless scans – the most pressing issue for me (apart from treatment to get the numbers down) is that I fractured several vertebrae. I hope they're going to be able to fix them…[Read more]

Our youngest was 3 months old when I was diagnosed (in August). Though I realise now I had been ill for a long time before he was born. I'm not surprised you, or your wife, are finding it tough.

Part of me is so angry that my children have to have their lives disrupted. And I know my wife found it hard at the beginning to look the…[Read more]

I'm 39. I was diagnosed in August too. And I'm on my 5th cycle of PAD. Myeloma sucks. It's a pain (literally), and it won't go away. I'd love to go through a whole day without thinking about myeloma once. I wonder if that will ever happen.

On the other hand. We only live once. I'm certainly not going to sacrifice whatever life I have…[Read more]

I'm 39 and I feel cheated – it's a tough think to face up to, and yes, a lot to take on (I was diagnosed in July). Definitely get yourself into the under50s by emailing Scotty. There are a few of us youngies around, which is reassuring.

I'm sitting staring at the forms trying to understand if PADIMAC is right for me (rather than just have CTD and then SCT). I think – am I right in understanding – that if the PADIMAC response is good then they won't want to proceed to SCT. Though whether one could opt out of the trial, and into SCT, some months on, I'm not…[Read more]