[AlexBParticipant]

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.

[AlexBParticipant]

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 (average) results than thalidomide. I have high risk cytogenetics, for which thalidomide is thought less effective, though I didn’t know that when I made the decision.
Yes it meant a lot of trips to the hospital, but I was in such a mess – mentally and physically, I’m not sure how much that made a difference. Even on days I wasn’t being treated I’d end up in hospital, like as not.
It does mean they pay more attention, do more tests, bring you in for more consultations. That can be annoying, but it’s probably good for your health

[AlexBParticipant]

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 know the ins and outs of treatment at the time, if it meant you got more “normal” time together. I shield my kids, not because I’m afraid of death, or don’t think they can comprehend it. But because I don’t want their childhood, and our relationship, polluted by it. Death (or the thought of it), already pollutes my adult relationships, and that is enough.
Your offer to answer questions is a very generous one. Can I leave a note to my kids to call you? – but hopefully not for a very long time.
I don’t know if my experience is anything like your father’s. I’ve learned, this last year, how easy and wrong it is to project our feelings on to others. I do know, that for me, my family is more precious, and I enjoy them more, than ever before. I know that myeloma can’t take my soul or my spirit. I know that it isn’t how long we live, but how well we live that matters. And I know that children losing their parents is hideously horribly unfair, but also that life is unfair and it isn’t in my power to change that.
Strength to you SP. You’ve made me cry as well – sadly, but in a good way too, because I’m thinking how precious life it while we have it. Yours, as well as mine.

Alex

[AlexBParticipant]

Garry, and all Sue's family.

There is, as always, nothing useful to say. Sue was always a wonderful enthusiastic voice in our little community. I will miss her. My thoughts to all of you – especially Sue's daughter. I have young children myself. That children have to live through the effects of myeloma is the most awful thing of all.

Alex

[AlexBParticipant]

Chris, Peter,

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

[AlexBParticipant]

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 regular blood tests aren't "diagnostic"

[AlexBParticipant]

Oops – meant to address that to Chris

[AlexBParticipant]

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 vertebraplasty. But I too have all sorts of reflected pain – in my neck, my abdomen etc.

My physio gave me some simple exercises to help open up various muscles, move my shoulders backwards and arch my spine. I'm also doing lots of lying on my back on a hard floor, and regular swimming. Between them these are making a big difference – and making "walking tall" easier. I've been doing the exercises for a month so far. My physio told me it needs 3 months – 6 weeks to unlearn bad posture, and 6 more to relearn good posture.

Hope that helps. I could give you more details on the exercises I do, if you would like. Might be easier by email?

[AlexBParticipant]

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 my PR has turned into VGPR, with counts still falling. Assuming I get a few years remission out of it, I'd say its easily worth it.

[AlexBParticipant]

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 bit has been tough. I'm just getting back in to "Dad" role.

[AlexBParticipant]

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 group. And stick around on here too. Myeloma is horrid, but the human network are brilliant, and can give you lots of support. And we're very luck to have Myeloma UK to fight our corner and provide us with information.

[AlexBParticipant]

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

[AlexBParticipant]

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 with your family and friends.

Alex

[AlexBParticipant]

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 the scores are a personal thing. Others talk of light chains 10,000+, but I think that would almost certainly kill me!

[AlexBParticipant]

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 incredible.

How are you getting on? Back to work, and "life as normal"? I hope so. We need to grab as much normal as we can.

Because I am a bit of a nut, and because I just hate being knocked off course, I am doing my best to complete my teacher training on time despite the treatment. And I'm even continuing to run my business (a little) in the gaps. Exhausting, but every hour of "normal" is, well, an hour of "normal". And what else can we ask for?

Alex

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