Hi Dai
I don't know if you use twitter but after a bit of hunting you can find some very useful links to reports from the US on there. I find it very useful. I now follow several posters from the US and get the latest news from over there.

Andy

Hi Alix
Good luck with your run and money raising. I used to run ordinary marathons before Myeloma damaged my back. I regret to say I only once ran for charity which I now regret. If only we could turn back time.
Once again good luck with the run and training – the hardest part! – and thanks for supporting Myeloma UK.

All the best
Andy

Hi Teresa
We had a great time in the lakes thanks. The weather was a bit wet but hey without the rain they'd be no lakes 😉 unfortunately my back was causing me a bit of trouble so we didn't get to walk far but the change of scenery did us a world of good. We've booked again for early September hopefully the sun will have turned up by then…[Read more]

Hi All.
Many thanks for taking time out with all your suggestions.
Dai thank you for your thoughts and advice I found them very helpful and insightful and will base my meeting around your advice. I really like your posts and how much thought you must put into them I find them very informative and helpful.
David I think I have been trying…[Read more]

Welcome to the forum Alethea.
None of us want to be here but here we are. You will find us a friendly bunch – sometimes funny sometimes sad but always supportive. We are all at different stages of this dreadful disease and everyone's journey and treatment is different. It's a very individual disease.
I myself was diagnosed October 2011 after…[Read more]

Hi Keith
I take my Rev just before bed. Can't remember if I was told to or I just assumed that was the right time because that's when I was told to take my thalidomide when I was on it. It may of been in the Rev box paperwork along with the side effects – I sometimes read them when I'm bored 😉

Hope everything turns out well this week…

Hi Ali

When I had my Hickman line fitted it took approximately 30 mins start to finish. The longest part was waiting for a x-ray afterwards to unsure it was in the correct place. Mine was fitted at the day unit.

Andy

Hi Keith
Sorry your struggling with the Rev/Dex. I find I have half a day to do what I want to do then I get tired around 1pm and have to sit in front of the tv and fall asleep during the afternoon film. I haven't at any time felt like passing out though! Hopefully it is something that will pass.
You may improve as you become use to the drugs…[Read more]

Hi all

Many thanks for all the replies 🙂

Dai when I was first diagnosed my PPs where 50 and I was told I had to achieve at least a 50% reduction before I would be considered for SCT. Wether that is still the case I will check when I next see my consultant. They have already tested my brother and sister for matches for a Allo SCT my brother…[Read more]

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

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…[Read more]

Dear Siobhan
I am very sorry to hear of your mum passing. I only knew her a few months but she was inspiring. There are a lot of inspirational people on this site but in my opinion your mum was the star. She gave advice and comfort freely and helped me when my head was filled with dread of MM when I was first diagnosed.
I hope you can gain some…[Read more]

Hi Keith
Yeah I self administer the injections. It's not too difficult you soon get used to it.
All the best
Andy

Hi Keith
Good luck with the Rev/Dex treatment. I hope everything goes well for you. I'm on Rev 25mg for 21 days then 7 days off and Dex 40mg days 1-4, etc with tinzaparin injections everyday. I get the usual Dex moods 🙁 but I think I'm tolerating Rev ok – just the occasional slight cramping in my feet at night time and a bit of tiredness. My…[Read more]

Hi Helen.
Glad to see you enjoyed yourself in New Zealand.
I asked the same question about how long do I have to keep up the 3 litres a day a couple of weeks ago and got the same answer – forever! Fortunately my taste for beer has come back a little so that does help 😉 I was getting sick of just water and tea. So now I have a beer or two a…[Read more]

Hi Keith
Sorry that your fears have been confirmed. When we spoke at the support group you were very sure you'd relapsed. I'm on the Rev/Dex regime though not as maintenance as a treatment. Just started my 3rd cycle Saturday. Hopefully it'll do great things for us both.
Have a great time in Jersey and come back fighting fit ready to take on this…[Read more]

Hi David.
I'm on revlimid and dex as a treatment after all other treatments failed. I have just started my 3rd cycle. My paraprotein level came down slightly at the end of cycle 2 from 41 to 35. Not a big fall but it was in the right direction. I'm not getting to excited about the reduction because I've been slightly lower before. I do get…[Read more]