Deb x

The Perfect Pair is a wine tasting event with a difference…and we hope that you or your friends/ business colleagues might want to get involved. The event is being run by me, Deb Gascoyne, and I’m a…[Read more]

I got diagnosed in 2009 with myeloma and am lucky to be 3 years in remission post SCT.
To celebrate I am using my 40th year to raise awareness and money for Myeloma UK by doing a ’40 C…[Read more]

I decided this year to do 40 Challenges B4 40 to raise money for Myeloma UK before I hit 40 in January 2015. The plan is to try to raise £10,000 through various challenges, and through getting other people involved. I hope that it will also help to raise…[Read more]

Babs, I am just not sure whether it is just the revlimid because of the fact I've been on it so long without any side effects. Helen, I think you might be right about slap cheek….sort of didn't want to face into it. I'll see if I'm the same tomorrow and perhaps get a GP appointment if so. I've now scared myself reading…[Read more]

Deb x

I'm 38 and was diagnosed at 35 but haven't heard that one before. I think that it is individual and is probably more to do with your genes than your age as to what impact it has on your body. But I don't know for definite. Have you tried asking the Myeloma Infoline?

I'm not sure if you're asking for you or someone else, or…[Read more]

I've been on zometa for about 3 years now (although I came off it for my transplant in 2011 – blimey it doesn't feel that long ago!), 18 months since transplant. I…[Read more]

Debs

I'm going through the same feelings at the moment although I'm being far less careful than you, presuming that I'll be ok :-/ and hoping for the best!

I'm on maintenance at the moment and after nearly 18 months, my neutrophils dropped to 0.56!! They managed to get me up to 0.8 by taking me off revlimid for 2 weeks and giving me 5…[Read more]

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]

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

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]

I've posted before, but thought I'd just let you know about our Glitz and Glamour Auction in aid of Myeloma UK. It is being held at our Ball on Saturday night, but we are taking online bids until midnight on the 7th November for the Silent Auction, and will also take Sealed Bids (i.e. you email me with the item you are interested…[Read more]

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]

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]

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]

This summer we went to…[Read more]

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]

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]

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

take care
Debs

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

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]

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]

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

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…[Read more]

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

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

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

x

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

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

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…[Read more]

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…[Read more]