I got no neuropathy. I got wicked abdominal pain from the velcade. But then, I was in plenty of pain anyway. I don’t know if the side effects were better or worse than CTD. They were absolutely nothing compared to what came next when I had the high dose melphalan for my SCT.

I’m on PADIMAC
I did 6 cycles of PAD. I had a bit of a wobble in the second one (liver function, not sure why) and had to stop for a bit. But I was able to carry on full doses of velcade and dex, but attenuated dox.
It got me into PR.
I had an SCT in March and am currently in VGPR.
For me it was a no brainer in the end – velcade has better…[Read more]

I only just found this, SP
I’m another in the position your Dad was in – I was 39 when I was diagnosed, and my kids were 6, 4 and 0 (now 8, 6 and 1).
I don’t know what to say to you – but I’ve spent a lot of the last year or so thinking about my kids being in your position. I’m sure your Dad did too.
Myeloma is a piece of shit. I’m glad you didn’t…[Read more]

Chris, Peter,

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

It's a good question

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]

Oops – meant to address that to Chris

Hi Peter
I compressed at least 4 vertebrae last year and with the bone pain of active myeloma plus the side effects of velcade and chemo, I wasn't very active for almost a year. (I used to be very active – running 10kms several times a week.)

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

I had an SCT in march. Chemo (PAD) had got me into PR, appeared stable and no longer producing symptoms. But my consultant told me I'd be more likely to get better remission, for longer, with SCT.

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 worked through my chemo, but have taken 3 months off to recover from SCT.

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]

Joanna, sorry to meet you! I'm 39 with 3 children (7, 5 & 1) and was diagnosed last year. I completed 6 cycles of "PAD" and am in recovery from an auto stem cell transplant 2 weeks ago. If you want to talk, I'm here. Myeloma and young children is a pretty mind blowing combination.

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

I used to be able to smell it coming out of me – when I peed, but even through my skin when I slept. Delicious.

Jacqui

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]

Me too. Kappa light chains. No m-spike. Diagnosed last year, though my symptom history suggests its been there a good old while.

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]

Hi Helen

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]

Hello. Another PADIMAC-er. I'd just enjoyed my 39th birthday when the diagnosis came for me, last year.

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]

Hi Steve

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]

Thank you Helen for reminding us that there's light at the end of the tunnel. It just seems a very long tunnel when you are right in the middle of it.

PAD is velcade + doxorubicin + dexamethasone. Its part of a trial looking at whether they can delay SCT – I don't know yet what my results will be.

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]

Stewart

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]