[DebsParticipant]

Hi Nicola,

Definitely do the skydive….I did one about 18 years ago (!) and absolutely LOVED it! I would do it again, but I'm not sure anyone would sponsor me now as they know I can do it. I didn't stop smiling from the minute I jumped until about an hour after I'd hit the floor (standing 🙂 )

Go for it!

Debs x

[DebsParticipant]

Hi Judd,
I don't live in London, but in High Wycombe and have family and friends in London.
I would definitely recommend the Under 50 that Scotty and Phil run, but I'd stay on here too…they both have lots to offer!
Not everything is inevitable so try to keep positive – though I think that is harder when you are first diagnosed, it becomes easier as time goes on.
Good luck with it all
Debs x

[DebsParticipant]

Hi Charlie,

I think everyone has pretty much covered things and I even wondered about not replying! But I thought I would say good luck with the Myeloma XI trial and tell you how well it has worked for me.
I got randomised to revlimid and had 4 cycles of that which brought my pp levels from 50 down to 28 – then I plateau'd. I was gutted. I then got randomised for velcade and that bought my pp down to 8 at which point I had a SCT. The chemo was hard when I got to velcade….I had worked on the revlimid and found it ok. Velcade exhausted me for about 2 out of the 4 weeks. But in-between I could still do most things!
I am now a year post SCT and whilst it hasn't been easy, I am now up to about 95% I reckon. The only difference is that I get tired more easily and if I get ill, I tend to hold onto that for longer.
I hope that gives you some confidence that it can all go the right direction.

I don't know much about financial help. We go to the Marsden which is a 3 hour round trip for us, but we chose that over our local hospital so I think we have to just suck it up. I don't think I'd get DDA now, but I wish I'd applied for it when I was really ill as it looks like I might have got that and a car then!!! Now I have to put up with my clapped out focus!

You haven't done the wrong thing being on the trial. The treatment is as good if not better than what you would get off it, and if at any point they try to get you to go down a route that you don't like, you can pull out at any stage with no compromise on what you would get as standard treatment.

Good luck!
Debs

[DebsParticipant]

Good luck with it Nicola!!!

I know how hard it is to organise these things so well done to you for doing it and I hope that you raise loads and have a great time at the same time.

Debs x

[DebsParticipant]

Dear Gill,

I am really sorry that you are reaching this difficult time for you and Stephen. Like Tina has said, I hope that you are able to make the most of every minute with him (and that the short temper isn't too horrendous).

Thinking of you
Debs xx

[DebsParticipant]

Good luck ANdy….really hope you get some answers and a good plan for you.

Will keep an eye out on fb for how it goes!

x

[DebsParticipant]

Chris, that is amazing news and like the others say, thank you so much for sharing your great story.
I don't think any of us find it easy to think that we have 20 years ahead of us….I try to be positive, but at the back of my mind is that it is very unlikely. But stories like yours are so important for us to hear so that we start to REALLY believe that it could be us.
Well done to you and I hope that you are enjoying life to the full! You've put a smile on my face this morning 🙂
Debs x

[DebsParticipant]

Hi Ian,

I used curcumin when I was smouldering. I used Doctors Best (think with bioperine) and built it up using the protocol Margaret suggested (otherwise you end up on the loo every 5 minutes! Takes some time for your body to get used to it!!!)

Let me know if you can't find the details and I'll take a look for you

x

[DebsParticipant]

Great news Avis

Well done for getting that done – the charity is amazing so I think they deserve every penny we can raise for them!

Take care
Debsx

[DebsParticipant]

Hi there

I'm not surprised that you're nervous, but hopefully we can all help to relieve that a bit!

Firstly, my consultant said that the % is more like under 1% and that is the case with most hospital procedures that are of significance.

I had my SCT a year ago, and Tom is right, it isn't nice,but you get over it…it's a bit like labour! They're sort of right that in that first week as a patient, you don't really want to do anything at all except for sleep and get over the side-effects. But then, it is an upward route normally. So long as Colin takes it easy and doesn't overdo things too soon, he'll build up each day. I reckon I am now at least at 95% of where I was a year ago so yes I would do it again. A tip now, is for him to focus on how much he improves each day!!

There are lots of posts on here which give advice for the SCT to make it a little easier

Hope the red wine is going down well! 😉

Take care
Debs x

[DebsParticipant]

Oh Keith,
So sorry to hear that news….I can't imagine how you must feel about it.
On the positive, I'm glad you can wait till after your holidays, and if it helps, I never suffered badly with revlimid when I had it with dex (or without the dex now). The worst thing was the fact that everything tasted peculiar….not horrid, just weird!!!
Have a lovely holiday and take care
Debs x

[DebsParticipant]

This is an article from Cancer Research

http://info.cancerresearchuk.org/news/archive/cancernews/2011-11-27-Scientists-identify-first-genetic-link-to-myeloma

My understanding is that we may have something that genetically means we are more likely to get myeloma than other people. BUT, there is some unusual stimulus (and they still don't know what) that will kick our myeloma into action. Therefore, whilst there is a chance of us passing the genetics on to our children, it is really unusual for them too to have the same factor kicking the same genes into action. I'm sure I haven't explained that very well at all, but after speaking with Prof Morgan about it, I felt comfortable that the chances of me passing it onto my children were as slim as me getting MM in the first place. Not SURE that it won't happen, but that the chances of it passing on like with some other cancers, were pretty small.

I would always encourage my children to get checked early now if they had pains etc but I hope I won't live worrying about what the future holds for them.

Hopefully they will find out more each year that they look into this. I know that the Myeloma XI trial that I'm on, asks us all to donate extra samples so that they can do lots more DNA testing…..we all need to do this if we can, and hopefully then they will learn more about this cancer. It seems like it is too expensive for them to do if it is outside of a trial so please, if people out there are on the trials, please let them take these extra samples.

Debs x

[DebsParticipant]

Hi KAren,

Welcome to the site. And drop Scotty an email and she will send you an invite to the under 50 site.

We're all here to help you through the early days, which can be really scary. But you will come out the other side.

Take care
Debs x

[DebsParticipant]

Hi Deborah

I think Dai has given you the low down on velcade. It worked brilliantly for me, but you must watch out for the Peripheral neuropathy and don't let your mum downplay it. I did and ended up with it for 9 months and needing quite serious painkillers.

It was absolutely worth it for the result, but I was worried at one point that I might get left with it for life….which is possible if you don't nip it in the bud.

Debs x

[DebsParticipant]

Hi Paul….and Andy

I just wanted to say good luck to both of you with your next steps….I am sure that there are a number of treatments still out there so try to keep positive….though I'm sure it's Bl*ody hard at times!!!

Debs x

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