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]

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]

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]

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]

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]

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

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

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]

Helen

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]

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]

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]

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]

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]

Welcome to the site. Sorry you’ve had such a ride of it so far, but I think you’ll have a very positive experience with the NHS and myeloma. Obviously I can’t speak for everyone but in general I get the impression people feel we get excellent care – I do.

On financial aspects, get in touch with Macmillan – you can book a call with a…[Read more]

A family tree sounds a great idea! I meanwhile am meant to be fast asleep so will keep this very short by my usual long standards – thanks for clarifying that it is still worth doing as long as I take those two…[Read more]

It’s very helpful to know about the first point, contacting your doctor, and that if anything (even irrelevant) is not declared the whole thing may be void. I had not fully understood – but had worried about that. I remember reading about someone whose life insurance policy would not pay out as…[Read more]

It’s a real pain, isn’t it? Here’s my experience with AllClear, for what it’s worth: I got an annual multi-trip Europe policy with them last May. It cost me something like £250-350 but I can’t remember exactly – didn’t seem too horrific for a full year, bearing in mind the myeloma. At this point I was in…[Read more]

It was great to read that Ian got home, even if a little later than planned. I hope he’s doing well now and even if the weather isn’t so favourable you’re finding plenty of things indoors to keep you occupied!!

take care and enjoy the run up to Christmas,

Helen

I’m very late to add my condolences. I think in some way I didn’t really want to believe it was true, and like others have said it was such a shock when I read the sad news: Dai was such an institution on here. Since that’s how it came across even in messages on a forum and never having met him, I can only…[Read more]

I never met Keith but I read his posts on the forum and he was so helpful in passing on his experiences and advice to other new myeloma patients starting out on this tough journey. He was clearly a very brave and lovely man, and you must miss him. I hope you are surrounded by love and able to take the time you need to grieve, and rest…[Read more]

Apologies for the Mills and Boon heading but well, it made me laugh at any rate 🙂

Mainly all is fine with me – I won't pretend it's a barrel of laughs, but the headlines are I'm making the slightly tricky transition back to 'normal' life and work etc, coming to terms with what's happened in the last 11 months, but feel grateful…[Read more]

It's great to read this news! I always notice that you worry about giving 'bad news' for newbies etc but looking in from the outside I always think your story is really encouraging, a story of hope. If at first you don't succeed, try, try and try again! I've hesitated to say that before because I'm not in the same boat and I realise it…[Read more]

Good luck with the next cycle and the results, and getting rid of that bed sore! Hang on in there.

Helen

I didn't have SCT but lost my hair from the induction chemo.

It's grown back a fairly similar colour with a bit more grey possibly (I still have v few). And yes it came back quite curly which it wasn't before. Well, sort of wavy/curly – curly when out of the shower. Lots of it but very soft fine hairs. And yes maybe a bit duller…[Read more]

Thanks loads, that's really helpful to know the £6000 / £16000 figures, I had no idea what kind of level they would ignore. Not something I'll have to worry about for a good while, hopefully, but like you say there are always these choices about things like mortgage overpayments vs keeping it in the bank, so it's important to try to b…[Read more]

That makes lots of sense to me and is roughly what I'm doing – work and spend 🙂 as long as I can, finding out what I can sensibly about the future but meanwhile making sure I enjoy today. I just had a great long weekend break with a friend in Liverpool actually, and am looking forward to getting across to France/Italy…[Read more]

You really are a total hero for working those hours! I am not a morning person and have often been known to turn up late for 10am team meetings, even before MM. I hope you do consider taking some of your pension early or going part-time, even though the benefits system is so ill-suited to the situation you're in. You deserve a rest!!…[Read more]

I just thought I'd drop a line on the depression side of all this. It's not surprising you both feel very emotional and depressed at times, it's a horrible experience and particularly after it's dragged on for a while and with you having to be separate and Ian not mobile it is a very hard situation you're dealing with. It's ok to…[Read more]

So sorry you are having to go through this. I'm on my first remission and even already the smallest worry about my results generates huge waves of worry/depression about relapsing so I can only imagine how demoralising it feels, and how confusing to enter a new world of having to make choices.

I think others are better informed but…[Read more]

Yes, I'm doing pretty well in 'new normal' thanks…. Due to go back to work from Friday (1 Feb) on a 'phased return' basis, gradually building up. Still ups and downs in both energy and mood I guess, but overall a definite upward trend, with more time between the downs and increasingly able to do more and more things which is so nice.…[Read more]

Just to wish you good luck! I was diagnosed at the end of May/early June and am now in complete remission. I'm not having a stem cell transplant, as I'm on the PADIMAC trial which Megan mentioned, so it's 'watch and wait' and see how that pans out. Like Tom said, ignore any offputting statistics (I also heard some shocking ones…[Read more]

Well done on surviving getting the line fitted! Not the most fun thing.

I think we're a fairly rare group having the pump, seems to be a St George's thing – at least I've never seen anyone else talk about it. I don't have any particular tales to tell – I tended just to wear a cardigan with big pockets and stick it in my…[Read more]

Nice to 'see' you and hear that you're out the other side of the cycles. Best of luck for the stem cell harvest and SCT! Sorry you have to go through that extra stage – but whatever it takes to beat the myeloma into submission is worth it!

Helen