Well, I thought I'd do a quick update in case anyone else is going on the Myeloma XI trial.
I'm now on day 5, so have had 4 days on dex and 1 day off, and still seem to be doing pretty well! I know it is early days….as Nick keeps telling me, we've got over 100 to go, but you have to take what you're given don't you!
I think I can sum up so far in saying,
– limited sleep but only in so much as I don't sleep deeply….I haven't been up for hours in the night or anything awful like that
– everything tastes like salt water (even the glass of champagne I tried at my niece's 21st yesterday 🙁 )
– some raised bruising on my legs which I'm just keeping an eye on but doesn't seem to be getting worse.
Nick is off to Madrid for 4 days now with business so I'm keeping my fingers crossed nothing deteriorates while he's off…think I'd find that a bit scary!
Anyway, hope that this sort of diary might help someone along the line!
Debs x
Hi Scott,
Welcome to the UK website….and yes I was down as hopefulmum…..don't like the title now (though of course I am hopeful!!) but I signed on as that when I was pretty depressed about my diagnosis and when all I'd read was the american titles!
A bit more upbeat now, despite having just started on CRD (via the Myeloma XI trial). Luckily finding the treatment so far pretty side effect free so that's good for anyone else who finds themselves in the same position.
Anyway, hope you stay smouldering for a long time yet Scott!
Debs (hopeful as ever!)
Hi everyone,
Thanks for the replies. Well, I'm on day one and like you said Norman (and it's great to find someone else on the same trial!)so far no side effects apart from feeling a bit dazed – but I think that is more to do with the fact I didn't sleep all last night (despite not having started the CRD!)!!
Anyway, I know it's early days, but it's a good start!!
Debs x
Hi David,
Might be able to help you there. I used to be on talktalk and had the same problems. I think it is something to do with that your account is with talktalk to send emails, and since you can't get the internet access via them, you are unable to send emails. I don't quite get why you can receive them but I had the same thing!!! I never did work out if there was a workaround but I don't think so.
If the hospital was talktalk, you might find it still worked 🙁
Debs x
Thanks Bridget!
I'll ask the question tomorrow but I think you're right! And my other thought, is why are we all so worried about using the best treatment first…..surely it's better to use it up front and get the best quality of life earlier?? (actually, if I'm honest, that's my husbands thought, but I have to say I agree!)
Debs x
Hi Dai,
I did suggest to the webteam when I met them at the london infoday, that perhaps there should be an area of the site where people know that once they enter it the language might become a little bluer!!! Funnily enough, it doesn't look like they took me seriously!!
God forbid they ever take a look at the Under 50 site…they'd be horrified at us on there!!!
lol!
Debs x
Hi Katie,
Not sure on the answer to that one, though I will ask on Tuesday. I'm not sure it would as I thought that it was more that you weren't allowed access to it (because of cost) until you'd tried other options. I also read something somewhere that suggested that if you stayed on revlimid for more than 2 years, celgene pay for the drugs? But don't hold me to any of that…..we have lots of questions yet to ask!
I wouldn't necc get all the drugs anyway. Knowing my luck I'll end up on the standard treatment and won't get the revlimid!
Hi Mari,
I think that basically I have a 50% chance of being given CRD or CTD as induction therapy, and then depending on how I respond, I may get velcade before transplant (if I don't get a full response) and then after transplant, I have a 50% chance of getting Revlamid as a maintenance drug, which has been shown to be really successful in France.
So, if I manage to get Revlamid at either of the two stages, it would be great news and if not, I just have treatment as I would have done anyway.
Thanks for your best wishes.
Debs x
Hi Scotty!!
You're looking like you're in a very bad mood….so black!
Give me a shout if you want any help.
Debsx
Hi there.
It is so hard isn't it to know whether you're getting the right treatment or not. I have been asymptomatic until recently and was worried in the same way as my paraprotein went up over 6 months or so from 32 to 45 which seemed high in comparison to lots of other people. Like Mike, I had no other end organ damage/ bone pain etc.
What helped me was when I heard from a couple of people who said their paraprotein had been at around 70 odd before they were treated. I believe they're reluctant to treat with no signs of end organ damage. It may be that they wait till either his hb drops, calcium starts to rise, or he gets some sign of bone pain.
I'm about to start treatment next week as I have started gettting slight bone pain and my hb has dropped again for the second time – my bmb also came back at 50% last time. But even with that my consultant has said I could have waited a little longer if I'd really wanted to/ felt it was necessary.
So, I would just ask them to talk through all Mike's readings and explain to you what sort of things they are looking for before they start treatment? But I'm sure it won't be stroke related, although perhaps that makes them more likely to wait until they have to treat rather than using it as a safe option? Only a thought and I'm no medical guru!!!
Good luck with it all and keep us updated.
Debs x
Am slightly worried that I spotted this one straightaway Gaye….what does that say about me???!!!
Thank you to one and all!
Gaye, please don't ever apologise about giving advice on the under 50 title….I wasn't really sure where to post this one, and to be honest age is irrelevant isn't it. Not always, but definitely on the treatment side!!!
It is good to hear about the fact that a number of people didn't get side effects.
We told the kiddies today but given that they're only 4 and 6, I don't think they really understood. Which is a good thing. Our 4 year old got a bit concerned when we said I'd be in hospital for a little while (we didn't want them to think the medicine hadn't worked at the end of the CTD when I go for a transplant and thought by telling them all upfront they'll know it was expected) but he was happy when I said it wouldn't be for long and that he could visit and we could talk on Skype like he does with one of his aunties and nieces.
Tina, thanks for the items for the tabletop….I'll let you know how it's gone when I've recovered!! I have to say, I think doing the 3 Peaks was easier than organising this!!! And probably more enjoyable despite the photos and all my moans!
Debs x
If possible, I think it would be good to see the latest posts without having to go into each category. Otherwise someone might not look at the treatment section who is Under 50 and visa versa. It becomes a bit of a hassle having to go into each one to see if there are any relevant posts.
Do you know when you will transfer the old posts over? There is so much valuable info there on SCT's etc and it would be awful to lose those.
It looks like you automatically update the subject now on replies….that's a great change…thanks!
Thanks
Debs
Hi Michelle
Sorry to hear that your mum hasn't been well and is back in…..at least she's in hospital now and I hope that they get on top of everything pretty fast.
All the best
Debs
Hi everyone,
Well I promised a summary and I'm not sure that I'm going to do very well so sorry up front!!
It was a great day, really well organised and I found it really useful for all those personal reasons you can't really put into writing. It was hard listening to people talk about side effects etc given that I'm probably quite close to starting treatment, but on the otherhand it was great to see so many people there on and off treatment, but doing pretty darn well!!!
It started with Dr Faith Davies giving a great talk on what myeloma is and how it affects people….fantastic for people like my sister who don't know too much and are a bit scared of looking it up on the internet. And actually I learnt quite a bit too!
Then there was Dr Sagar Lonial from Atlanta…I found him a bit hard to get my head round a lot of what he was saying, but after a following talk from Prof Gareth Morgan, it became clear that perhaps with the exception of Little Rock, that actually we are all starting to sing from the same sort of hymn sheet. The only difference sometimes being the manner in which we obtain the drugs. There was a lot of jargon going on with Dr Lonial's talk but I think again, that is because I haven't started treatment so am not so clear on what a lot of it means in UK terms, let alone USA terms.
There do seem to be lots of drug combinations coming out of the trials and it looks like it might not be too much longer before we see the trials in the UK.
There were a few other sessions, that I won't go into but were really useful from a personal perspective.
A few key things that came out that might be useful to someone??
1. Some data is starting to come out of Spain suggesting that if you treat asymptomatic myeloma early, you might delay time before full MM develops. However, it was only a trial of 80 patients and whilst they're looking at more trials, it is still early days.
2. Velcade patients shouldn't be taking green tea/ Vit C in excess. (No comment of what excess was?)
3. Flu jab/ swine flu should be fine so long as no additional factors other than MM to take into account. But if you're really ill, and it might affect your quality of life, might not be worth the risk.
4. Carfilzomib (is that right?) and Pomcelidomide (??!!) result in less neuropathy than velcade. If you are suffering peripheral neuropathy, esp with velcade, someone should be looking at giving you treatment break/ lowering your dose asap before it gets too bad.
Please note that if you think any of this affects you, please check with the MMUK team that I have got my facts straight!!! Would hate to give anyone incorrect info!
Sorry this isn't very technical but I spent a lot of the time trying to get my head round what they were saying and didn't always write notes!!
Thanks to the whole MMUK for a really professional and informative day though….would definitely recommend it and would personally go again, esp if my situation develops before next year.
Debs x
