Hi Min,
It sounds as though Peter has been going through the mill recently and I hope he soon picks up. The worst of my aches are starting to ease off, and I don't feel quite as stiff today, thank heavens. Mind you I have only had two tablets from the new reduced dose of Revlimid so things could change!

I find the worst thing about the Dex is…[Read more]

Hi! I was just about to post and ask how many folk on Revlimid had suffered from horrendous muscle and joint pain when I saw your post. I'm glad it isn't just me :>

I've been on my week off and hoping that things would improve, which in all honesty they have done, but I am still so stiff and sore that I wince every time I need to move.…[Read more]

Hi Wolf,
Yes, I was told to take the Revlimid at night and took it last night at 10pm fearing the worst. It was fine. Didn't need the sick bucket on standby or any of the other measures I had taken, just in case. In fact the only problem I had was that the wretched dex makes me hum and I couldn't sleep. I was still clock-watching at 4.a.m so only…[Read more]

It's so interesting to read everyone's comments on their experiences. I have to confess that I am dreading tomorrow night when I shall have to take the first dose of Revlimid. My biggest concern is the fact that I couldn't tolerate thalidomide during my induction therapy. I certainly don't want to lose my voice again or end up with numb lips and…[Read more]

Hi Wolf,
I am due to start Revlimid on Monday so it was interesting to read about your experiences. At least I shall have an excuse for acting slightly batty from the sound of it!

I'm having 25mg of Revlamid, plus 20mg of dex (it was supposed to be 40mg of dex but I argued that it was too much based on previous experiences, so the haematology…[Read more]

Min, thanks for your encouraging words. I have my fingers firmly crossed that 1/ it works and 2/that it won't cause too many side effects. As you say, the good thing is that I won't have to visit the hosp. twice a week, although I do find it surprising that they let you trot off and take it without constantly checking your bloods, as they do with…[Read more]

Just to let you know that I saw a doctor (no point saying [i][b]my[/b][/i] doctor as I had never seen him before) on Wednesday and the long and short of it is that they will not give me Velcade for a second time. Oh, I argued my case but the decision had been made that I should have Revlimid and that's what I will have, that plus dex. I refused to…[Read more]

Fortunately, I've not had any problems re my veins. The nurses always manage to find a decent one without having to resort to the warming up method (in my area this is a bucket of hot water – nothing as fancy as an electric warmer up here!)I have seen other patients suffering as the staff try to get a line in so sympathise with you all for having…[Read more]

Hi Keith,
I was able to tolerate Velcade really well, far better than the CDT I had for my initial treatment. There were a few hiccups along the way, and I couldn't have the very final infusion of the 6 cycles as the soles of my feet went numb (they recovered), but there was nothing I couldn't cope with. It worked well, too, which is the main…[Read more]

Dear Mavis,
I had CDT the first time round (cyclophosphamide, dexamethasone and thalidomide)I reacted badly to the thalidomide – throat, mouth and lips went numb and I was covered in a rash – so that was stopped. The rest made me feel dreadful, extremely weak so that it was a struggle to look after myself. I'm a widow and live on my own so being…[Read more]

Thanks everyone. It sounds as though obtaining Velcade for a second time isn't merely a pipe dream. I had feared that funding wouldn't be available for more than one round of it.

I shall definitely hold out for it, if and when it becomes necessary.

As for GPs being responsible for the drugs budget then it does send a shudder down my spine,…[Read more]

Thank you for your replies. It looks hopeful if at least a couple of people have been "allowed" to have Velcade more than once. I am working on the theory of better-the-devil-you-know which is why I am pushing for it.

I was diagnosed in Sept 2008 and the first lot of chemo was a nightmare – I have never felt so ill in my life. I was terrified…[Read more]