Oh and as to cost – I read over the weekend that Revlamid is $425 a pill :-0 obviously that's in America.

Every day is a gift ( and expensive )
Andy

Hi David
First of all I only see one consultant and she has been my consultant since I was diagnosed. Obviously if I have an emergency whilst she is unavailable due to holidays or at another clinic I see another doctor but my consultant is the one that treats my myeloma. I have been referred on to Prof. Jackson at Newcastle due to my myeloma…[Read more]

Hi Eve & Slim
Sorry to read your news. I did see you'd posted it in another tread before. It's such a shame that Slim didn't get a decent remission out of the SCT especially after the fight he had to go through to get to SCT in the first place. As you say you did cram a lot into the 6 months whilst Slim was free of MM. Hopefully his next course…[Read more]

Hi Dai.
I'm at the day case unit Friday – hopefully I'll bump into Keith there and we'll have a catch up. The last time I saw him was the 8th March and he was just starting on melphalan.
As to your neutrophils mine haven't been over 1.1 for nearly a year now. My readings have hovered between 8 and 1.1 for the last 4 or 5 months but did go as low…[Read more]

Hi Helen.
Can't say I've ever felt the need to shave my legs not even for Red Nose Day 😉 as for curly hair well! Not having been through SCT I guess that's one treat I'm going to miss out on. :-/ I remember having hair – just – got some old b&w photos somewhere showing me with hair though I seem to recall I was also running around in shorts at…[Read more]

Hi Rab
Welcome to the site. Sorry you have to be here but I guess we are all sorry to be here. It's a warm and friendly place to be.

The good news is as the letter states your in complete remission so well done.

Zometa is a bone strengthening drug that also has shown to work against myeloma. I'm sure you'll of been prescribed it to prevent…[Read more]

Hi ner
I'm sorry that your mum has been diagnosed with MM. Welcome to the forum that all of us would prefer not to be members of.

Everyone's journey with this awful disease is different – but the starting point can be very similar – I too started off with back ache and it took 18 months for me to be introduced to the world of multiple myeloma.…[Read more]

Tom
Your right there are some right dickheads out there wrapped up in their own little worlds where nothing matters as long as they can breath, drink, smoke or do whatever THEY want. But and it's a Jennifer Lopez sized BUTT there are lots of people who do care. The problem a lot of the caring people have is vocalising their caring side. Some can…[Read more]

That's what I've been led to believe Tom.
Mind you it's still a long way off but I'm hoping to get my free Revlamid 😀

Hi Vicki sorry your not well, but it's great that Colin is well enough to look after you for a change. Hopefully you'll both have a long time to recharge your batteries now and get back to some sort of a normal…[Read more]

Hi Dai.
Thanks for posting Pats article. I read it on twitter, I follow him as he has some great insights and info, and found it to be very apt. I have found that those around me look at me and think I'm beating MM because I "look well" but I'm not. I know it's a fight I can't win. I'm living with MM I can't even get to SCT I'm on drugs…[Read more]

Thanks Mavis and Tom.
I've been told by my specialist nurse if I make it to cycle 25 Revlamid will then be supplied free for me to the NHS. Now that's a goal to aim for. 🙂 Though it'll cost the NHS a canny bit to get me there lol.

Andy on Dex :-/
😀

Hiya David.
I hope the blood sample you give today turns out to be a good one and your consultant has the same smile that seems to be permanently on the face of Tom's consultant. Good luck.
All the best.
Andy

Great news Tom my twitter & f/book friend 😉
As Dai says is great that you're here all the time giving support even though your in longer term remission. Could you have stumbled on the secret of long term remission VODKA? I think you should have a little celebration over the w/end 😉
In fact I'm going out tomorrow night and i'm going to have a…[Read more]

Hi Tom.
I'm on just in case anti-virals because I've never had chickenpox! There's a lot of it about at the moment and its very dangerous, or so I've been led to believe, to us MMers. If I come into contact with anyone with the pox 😉 or anyone who's been in close contact with someone with it I have to get along to the hospital straight away. So…[Read more]

Hi Rob.
I had the pump when I was on PAD it wasn't too bad once i got used to it though I too missed out on the red pee. I only had two cycles of Pad or it may of been three but it didn't happen for me 🙁 side effects wise I got a little numbing in the end of my fingers like you get when you've had your hands in water too long.
Hope everything…[Read more]

Hi Vanessa
I'm sorry Stewart is having such problems with everything – I remember having problems when I was on CDT and being in and out of hospital regularly with back problems and infections in my case. I know osteonecrosis of the jaw can be a side effect of Zometa and PE is a side effect of thalidomide. I was warned about them both at the…[Read more]

Hi Carryanne.
Welcome, belatedly, to the forum. I hope you have a long and successful stay. I'm one of the rarer cases with MM. I was diagnosed Oct 2011 and told I'd probably be having a SCT in the spring 2012 – well it didn't go to plan and now I'm on my 4th treatment and at last I'm making a little progress month by month. Auto SCT and Allo SCT…[Read more]

Hi Dai
Hope you are recovered from your latest trip to hospital and your bloods are good. I think temperature spikes with no discernible causes are a norm for MM.
I was at the day unit today for blood tests, zometa and to pick up my next cycle of drugs.
Keith was admitted to hospital Monday with a chest infection and was still in today lets…[Read more]

Hi Keith

I hope the transfusions on Friday went well and you didn't have to wait too long for the blood to turn up from Newcastle. Hopefully you'll have had a good weekend and your platelets start to climb and the CDT gets to work.
I guess I'll see you again Friday – with a bit of luck it will be only for blood tests for the both of us.
All…[Read more]