[AlexBParticipant]

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 going to finish me off!

I'm now enjoying a month of normal-ish and about to begin prep for stem cell harvest – and SCT (sadly, my only partial response on PAD).

For now you need to let your body rest as much as it needs to, and wait. You will almost certainly be feeling better than you are right now, soon enough.

[AlexBParticipant]

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 treatment between them suppress their immune system. No point putting yourself at even greater risk.

I was very active and fit – never been in hospital – until I broke my back while out running in March. One thing I have learned in the last few months is to face up to the fact that myeloma is real, and serious. We have the strength to fight it, but we also need to give our bodies a chance.

I'm in bed today. I'd like to be out on the traditional Boxing Day Walk with my family, but Christmas Day wiped me out and I need to regain my energy. I've learnt (the hard way) to listen to my body and not pretend (as I have all my life until now) that I'm superman.

[AlexBParticipant]

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.

[AlexBParticipant]

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 up a bit, in time.

My brain is mush too sometimes – and I've just spent most of this week in bed feeling crap (and missing my lectures). It's a long journey. All we can do is keep walking in the right direction.

Good luck.

[AlexBParticipant]

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 baby in the face.

But a few months on, he's a smiley happy positive influence in our lives and (along with his big brothers) he is simply "the reason" as far as I am concerned. With a bit of luck, you and me are going to get to do all the Dad things we had in our imagination, and we'll probably do it a whole lot better given that we're not in a position to take anything for granted.

All the best. Here if you want to swap baby stories.

Alex

[AlexBParticipant]

Chris, you have made my week. I look forward to leaving a similar message on a forum somewhere in 2032.

[AlexBParticipant]

Hi Kes

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 to moping around a stupid disease. I am fortunate that I am self employed and part way through a university course too – so I'm doing my best to continue both of those so I have something to do (and something else to think about). I'm also lucky in that I have 3 small children – who don't deserve to have their lives wrecked by myeloma either. They do a great job of keeping me sane and keeping me alive beyond my disease.

Don't be ashamed of feeling down – we have every reason to. It's a pretty tough hand to be dealt (makes you realise how easy life can be). And don't be deceived by how physically rubbish the combination of disease and treatment can make you feel. I just had an amazingly active weekend… followed by two days where I've hardly got out of bed.

Allow yourself the time you need, but also make sure you make the time to do some things.

I hope you and me are still having this conversation in 20 years!

[AlexBParticipant]

Hi Emma.

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.

[AlexBParticipant]

Hi Judy & Helen

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 sure.

What was your decision process? Are you glad you are in PADIMAC? I'm inclined to try it because I hear good things about Velcade, and I guess I think I'll get more supervision and so effectively better care. But then other people swear by the results of SCT.

Beginning to realise that every single aspect of this disease is shit – even to the level that you have to choose your own treatment, based on not enough information.

I'm 39 and in London too – so we have a few things in common

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