Great to hear from you Andy! Your vigilance paid off, and sheer willpower and determination (and great doctors it sounds like).
No need to reply but I hope the walking is progressing well and wanted to say hello (been wide awake on Dex all night so back on the myeloma sites catching up!)
Every day is indeed a gift, so enjoy today and here’s…[Read more]

Thank you Eve for writing (now and in the past) and I really agree with what everyone says about how great it was that you wrote, as I was online a lot at the time you wrote a lot. I also meant to say at the time that I loved reading about your incredible adventures off to France on your own for the first time, you really brought it to life in…[Read more]

Hello,

I was on a trial that deferred SCT if you got a good response (called PADIMAC). I responded immediately to the treatment (which was velcade, dex, doxurubicin, oddly known as PAD). After 1 cycle all my results were totally normal – I’m light chain only. This was from being ISS stage 3, lots of bone damage, some kidney and liver damage,…[Read more]

Hooray! Wishing you both a long time with myeloma as far as possible in the background after dominating life for so long! Make hay while the sun shines, gather ye rosebuds while ye may and all that 🙂
Helen x

Hi Andy,

Thanks so much for taking the time to share this, it’s so important. I hope you get out very soon. Pneumonia and unexpected hospital stays can be miserable, and missing a holiday is just gutting. I am crossing my fingers that somehow you are able to do something else instead this year – Canary Islands?? Or a nice UK weekend away to make…[Read more]

Dear Eve,

I’m so sorry to read your news – at least just in time to wish you all the best for the celebration of Slim’s life tomorrow. We’ve never met obviously but you both come across so vividly in your posts. I can see that you were very lucky to have him in your life and he was very lucky to have you there fighting his corner. You must have…[Read more]

Ha Tom I was also awake from 3am to 7am this morning, though I then did crash out for a bit afterwards till 930am. Good old Dex eh?

July is probably a bit optimistic for me too, that would only be I think if I did just 4 cycles and then everything went very fast in terms of tests and admin and faffing around. I’ve already done my harvest so that…[Read more]

Hi Sarah,

Glad it was helpful and thanks for letting us know. I hope the Dex makes the difference. It’s true that even ‘no rise’ is better than the way it’d be shooting up if he wasn’t on it, so maybe it’s zapping some of the clones but not all of them and another thing in the mix may help that. I hope so.

I know you’ve heard this before but…[Read more]

Hi Tom,

Yup fully harvested! Bumper harvest in October 2012 so hopefully they’re all safely on ice still.

Not sure yet about timing as it depends how many cycles of VTD I do, and I don’t have any results yet to help me guess that. I think the earliest I’d do SCT would be July, probably later I guess.

Race you!

Helen

Good luck Keith and thanks for posting! I’ll be doing SCT later this year.

Do keep us posted… But only when you have the energy and feel like it! I hope it goes really well for you and is a big anticlimax (that’s my ambition!)

It’ll be we’ll worth it when it’s all over and a distant memory anyway.

Helen

Hi Tom,

Nice to see you’re keeping in those good spirits. I’m on week 1 of cycle 2 so in following along behind you… Also velcade and (lots of) Dex but with added thalidomide, VTD. You’d have been told not to drink on that though, so it’s a good thing you can still drink your pints (and vodka??) Though I did check and it’s not like if you have…[Read more]

Sorry my ipad was being weird so I had to send without finishing and saying bye!
Good luck… I hope results start to pick up.

Helen

Hi sarah,

When I first had Dex in hospital I had some hallucinatory dreams etc, quite scary. I was wary of then having to take it again, but they did flag up to me that it may have been the particular combination of drugs and other issues I had at the time: I shouldn’t assume I would have the same effect again.

I had 40mg for 4 day blocks, for 4…[Read more]

Good luck John! I did the harvest in 2012 but not SCT – they’ve been on nice and I’m now expecting to do one later this year. So I’ll be interested to hear how you get on!

Thanks everyone who’s written on here, I feel like I’ve heard all the medical side effects before in great detail but hadn’t thought through practical/ emotiinal issues like…[Read more]

Hi,

I have that too! I currently have 20mg Dex on day of velcade and day after, so it’s Fri/ Sat, Mon/Tues for each of the first two weeks. Like you say, for me it’s two days after that the comedown happens: so for me Thursday is just totally a non-day. I feel utterly rubbish and can’t do anything at all. But at least now I know that so I plan…[Read more]

Ah thanks Eve… yes, guilty as charged of sneaking in my news 🙂

I did get an inkling back in late December and had it confirmed in early January that I’d need to start treatment. Then lots of decision making etc. I am on day 13 of Cycle 1 of VTD now. I’m still able to keep working etc so in some ways it’s just a case of getting on with ‘normal…[Read more]

Hi Tom! Hope you’re doing well.
I’m curious: what’s an MRI diffusion scan? Never heard of one of them… 😉
Helen

Hi Ann,
I just wanted to say I’ll also be doing an SCT and I’m going with the idea that it is doable! I know someone recently who did it and said it was an anticlimax – that’s what I’m planning to have too!
It’s a lot to take on, and the Dex etc drives you mad (I’m also on dex currently) but before you know it, it’ll all be over and you’ll be…[Read more]

Hi all,

Just to add another story to the mix to remind us all again how individual (and unpredictable) it is. I was diagnosed stage 3, bone damage, kidney problems, hypercalcaemia, pneumonia, really very ill, just as I turned 33. I had 4 cycles of PAD, with a very rapid response: light chains in blood and urine both vanished to zero after just 1…[Read more]