Hi Jean

Like others have said, try not to worry too much. But they are totally right that Frank should just be careful who he is around over the next week or so, especially if he wants to go to Spain! He needs to be as fit as possible if he is going to insist on going. I'd also ask his consultant what he thinks. I'm off to Beijing in August but…[Read more]

Hi Eve
My blood tests came back good – hopefully when they check my paraproteins next week we'll see some downward movement – however I'd been feeling a bit under the weather since Monday and my temp has been rising. It was 38.2 today so after my zometa they did all sorts of tests to find the source of the infection. They think it could be my…[Read more]

Hi there Tony

Nice to hear from you. I am on the Myeloma XI trial too..I got picked for revlimid and had 4 cycles of this before I plateaud and moved onto velcade for 4 cycles. Between the 2 they brought my pp levels from 50 down to 8 and I had my SCT in July last year. 9 months on and doing fairly well bar a few more coughs and colds than…[Read more]

Hi Teresa
I hope the hospital visit goes/went well. I was. At hospital today hmm yesterday now for blood tests. They came back ok. Though I did have a raised temperature – more pills to take.
I enjoyed reading your son in laws brewery website it's well set up and informative.
I'm happy to see he's brewing Belgian beers they are a particular…[Read more]

Hi Tony
Welcome to the group. You'll find out most things you need to know from your friends on this forum. Everyone's story is different and everyone's journey is also different. If you get stuck for advice then there's the helpline.
I myself was diagnosed in oct 2011 so I've not long started my journey. It's been a bit bumpy so far for me.…[Read more]

Hi Eve
I take my DEX just after breakfast – not that it makes much difference because some nights I'm wide awake and others I crash out. Today I was like a zombie all day just wanted to lie on the sofa with my eyes closed! Now I'm in bed I'm wide awake 🙁 Hopefully as soon as I put my phone down I'll nod off.
Tomorrow is blood test day – with…[Read more]

Hi Teresa
I am indeed a beer drinker [url=http://www.freesmileys.org/smileys.php][img]http://www.freesmileys.org/smileys/smiley-eatdrink005.gif[/img][/url]
Having a son inlaw with a micro brewery sounds like heaven to me. We've been out again tonight for a couple of beers with my brother and his wife. Not that I drink much nowadays. Is Peter a…[Read more]

Thanks Ellen,
Just need to stay in remission for a good 4 or 5 years or more and hopefully there'll be some trials in the UK by then…..or maybe we'll be even further along the line 🙂
Always good to have some hope in the pipeline!!!
Look forward to reading MUK's work on this next week
Debs x

Hi Teresa.
"feeling alright" = ok. I'm sure I would feel a lot better if it weren't for the drug but the drugs are a necessary evil :-/
I've had a busy few days with Easter ( going out having a few drinks 😉 ) and yesterday being my wife's birthday more drinks and a meal. Today I've been tired out!
I've been on a steep learning curve since…[Read more]

Hi David,

Yes I think they could well be part of life. I had my SCT in July and have only really had 3 weeks since the beginning of December where I've been without any sort of illness (wish I'd been on the antibiotics you were on!!!)

Paracetamol and lemsip cold and flu are my lifeline these days!!! I keep them in business I think.

But…[Read more]

Does anyone from MUK have any news on whether this is a drug we should be excited about or whether it is too good to be true….first time in ages I have been positively optimistic about what could be ahead of us, but I am wary as nothing was mentioned about this sort of vaccine at the info day.

It's frustrating though that there is limited support out there. I just about get the ESA (although am waiting for them to question that!) but am not eligible for DLA as I don't need support with caring for myself – I can just about cook etc but we have a cleaner as I don't have the energy for that. I wish I'd applied for it when there was NO WAY…[Read more]

Hi Helen

Think Paul has covered most things. I used to work in HR before all of this although it's been a while since I was on the advice side of things.

THey have a duty of care to see if you are fit for work….they shouldn't be asking you back if you aren't, but as with all business, are likely to take the view that if you are fit for…[Read more]

Hi Kirsty,

We'd all be lying if we said that the SCT was a lovely experience, but you do get through it!

The main things are to keep people away as much as possible for the 3 weeks you're in, and if possible for a month or so after. I only let my husband, and one of my 5 siblings visit….my parents and the rest, I made wait. I thought it…[Read more]

Hi Kay,

I'm with the others…think you are amazing to have gone back to work so much. I think about it and then know that I can't when i get ill from just overdoing it with the kids and looking after the house.
I suppose where you get joint pain, I get coughs and colds and exhaustion.
Perhaps think about doing a bit less if your work are…[Read more]

Hi Mavis
Sorry to read about your troubles. Hopefully the medics will get things sorted soon and you will be able to go home.
Love and best wishes
Andy xx

Hi Dai
Just thought I'd add a newbies perspective.
Since I've only been a member a few weeks I can't comment much on the history of the forum however since I plucked up the courage to post I have got nothing but praise for the forum. The support, advice and kindness from my friends that I have gained on this forum has humbled me. I now have…[Read more]

Hi Teresa
DT PACE well the DT part of it is the usual dexamethasone and thalidomide (tablets). The rest was Cisplatin , Cyclophosphamide , Etoposide and Doxorubicin all given as an infusion 24hrs/day. Not sure how it equates as "pace" but there you are.
I've enjoyed Easter thanks – we've been out and even had a few drinks…[Read more]

Hi Dai,
I don't tend to post regularly anymore because I find it all a bit tough at times.
Post transplant, I have been pretty much constantly ill with coughs, colds and illnesses. That alongside trying to run my family in some sort of normality,and organise my ball just takes it out of me, so I suppose that is perhaps the same for others.
I…[Read more]

Hi Teresa.
I was diagnosed Oct 2011 but I think my symptoms started 18 months previous. The usual back pain treated by the doctor with pain killers and Physio.
On diagnosis my paraproteins measured 50 after 4 cycles of CDT my readings only dropped to the mid 30's. I was then moved onto PADS (Velcade). I had 2 cycles of that with no movement in…[Read more]