Just bumping this one up so that new Under 50's (or thereabouts!) can get access to the Under 50's site – one bonus of the site is that you can rant and rave if you need to without worrying that the people you are ranting and raving about might read your comments – it is a private site so even those innermost feelings that you don't want your…[Read more]

Hi Megan and Phil

I've just read this post for the first time and wanted to say Welcome Home Phil. It made me cry reading the post, just because it brought back memories of the journey that Nick and I went through 18 months ago. I remember so well, those first steps outside of the hospital room and what a HUGE achievement it was 🙂

As…[Read more]

Hi Deb,
Welcome to the site and I hope you find it as useful as I did….it got me through the first weeks and months after my diagnosis.
I would echo what Lorraine has said above. It is scary in those early days when even the terminology sounds scary! But it does all get easier. I smouldered for a year, then went onto the Myeloma XI trial where…[Read more]

Hi there.
I thought I'd add my experience and say thanks to you all for your replies as they've helped me too!
I've been on zometa since November 2010 (with a break for transplant) and other than the 1st time hadn't experienced the cold/flu/ muscle aches.
However the last two times I've had it, I've been really achey and have had chronic muscle…[Read more]

Dear Anne & Pete

Thanks for that….I'd sort of not clicked that I'd be seeing our faces on the front cover! A bit of a shock to say the least! Anyway, I hope it helps someone out there a little bit…

Hope you are well

Debs x

Hi Stewart,
I echo what Alex says above….I was 34 when I was diagnosed in 2009. Our children are now 8 and 6, 3 years down the line. But they are who help me to get through those darker moments when your whole world feels upside down. That said, I can only imagine how hard it is to go through those 'exhausted' early days whilst also dealing…[Read more]

Hi Helen

Thank you for asking! The Ball was absolutely amazing…..the room was fantastic, the people seemed to really enjoy it and there was a lovely feeling around the place. We think that we raised over £22,000!!!

China was also amazing thank you….I wore a mask on the badly polluted days but generally we were quite lucky! It was a…[Read more]

Hi jean

PP levels definitely don't need to be zero…they were going to do mine when mine were at 28 still!! And they had only halved from 50! I am pleased that I got down to 8 when I had my transplant, but 0 definitely shouldn't be a requirement. They probably just want to check he has plateau'd before they make the decision…but I would…[Read more]

Thanks John.

One of the issues is that when you're on trials like the Myeloma XI trial, they won't let you have it sub-cutaneously (or at least they wouldn't a year ago when I was on it!!)

Not sure about how much revlimid is known to cause PN so need to ask more at my appointment next month….didn't think it was a major side…[Read more]

Hi Megan.

I was on velcade too and found that cold feet were the start of neuropathy. So glad that Phil has had the dose reduced as I tried to stick it out and it got worse and worse, to the point I had to have medications to try to relieve the pain…and they didn't always work! Luckily 6 months post velcade/ SCT things started to improve and…[Read more]

Hmmm… I hadn't even thought about it and have to say that I went swimming after about 6 months as my kids were desperate to go with us, and I was sick of making excuses of why I couldn't do things with them all the time. I spend my life around snotty nosed kids coming over to play and so can't really miss these things.

This summer we went to…[Read more]

Hi Sarah Jane

I am quite close to you as I live in High Wycombe!

I was diagnosed in 2009 with SMM and then progressed to treatment about a year later (although I now get treated at the Marsden in Surrey). I also was put onto the Myeloma XI trial in November 2010 and got revlimid first time. It worked for me for 4 weeks and then I plateau'd…[Read more]

Dear Rachel,

I am so shocked and just want to wish you all my thoughts as you deal with the loss of Paul. I remember him first coming to this site…he was always so very positive and you must have been so proud of him.

I don't come on here often at the moment, but know that when I did, he was always there supporting people.

Thinking of…[Read more]

Hi Sarah Jane

I've dropped you a reply on the other page so give me a shout if you want to catch up

take care
Debs

Hi Tessa,

I would be happy to say…..my email is gascoynedeb@gmail.com

MUK have been my lifeline…and like you I am doing much to help them raise money as it is the only way I can truly thank them.

xx

Dear Sarah and Henry,

I haven't been on here for ages due to doing the Ball, but am so pleased to have read this update and to see that things are going well. You must both be feeling chuffed to bits!!

Make sure he continues to take things easy…it really does take up to a year to get back to things full on, but then…and I really mean it,…[Read more]

Hi Sarah Jane

Sorry to hear you have had to join us all, but I'm also glad you found us!

It sounds like you've had a similar story to mine…I was diagnosed at 35 with SMM with a pp of about 30 too. I slowly increased like you and eventually because of suspected bone pain in July 2010, I started treatment at the Royal Marsden.

Life will…[Read more]

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

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…[Read more]