Hi Debs. I developed PN in my feet from Velcade 18 months ago on the 4th cycle. At its worst, I could hardly walk across a room. The improvement was very slow, but 18 months later, it?s improved and the pain is low enough to forget it – well most of the time anyway.

I echo what has already been said?.

I?m sure you?ll get good advice if you…[Read more]

Hi Michelle,

It was good to meet yourself and Phil recently at the Bristol workshop.

I hadn't realised you were about to hold your first meeting !.

I think it's great what you're doing and I'm sure it'll go well

Jim

Hi Donna,

I believe yout father's confusion can be related to very high calcium levels – hence the medical team trying to reduce the levels.

I think the same as Michelle re the second opinion. There are 'other things', perhaps less widely used that can and are being used. I know someone else who didn't respond to the standard treatments and…[Read more]

Hi Min / Eva,

Re the dose of Acetyl L Carnitine and Alpha Lipoic Acid… – here's a cut down version of the information I got. I ended up getting my supply of alpha and acetyl from http://www.discount-supplements.co.uk – costs approx £34 for 90 tabs each of 200mg Alpha and 500mg Acetyl. I take 1 of each twice daily. There were other things on there…[Read more]

Thanks for working on the Search function !.

Is it possible to have a more tailored search [u]criteria[/u] ?
I'm thinking of the ability to search within Topics, Posts or Both ?.

Is it possible to have a clearer display of the results than the current one on the 'old' site which seems to show them in random date order and with many…[Read more]

Hi Stuart,

I think adding some would be useful, otherwise an awfult lot will end up on 'General' by default !.

How about one for 'Treatments' ?. It could cover the many questions and comments on ones like CDT and CVD and newer treatments. Maybe the one for 'Access to Treatment' (which is quite specific) could be part of it.

Also one for…[Read more]

I was told by the Clinical nurse that Acetyl… and Alpha… are prescribed as a matter of course in the US whenever someone is put on Velcade treatment.

It's not available on the NHS so I bought my own !. I didn't find this out till after I'd developed PN so I don't know how much it woulld have helped if I'd taken it from the…[Read more]

I had the PN pretty bad when I had an SCT in April. But in my case the nurses were aware of it. I spent a lot more time laying on the bed because of it and it was definately painful walking around !.

Because it was my feet that were painful, I found it 'comforting' (relatively) to lay on my front with my feet resting on a couple of cushions.…[Read more]

Hi Roz, my first post on the Beta site !.
I developed PN too after Velcade treatment. There's no easy answer to how long it lasts or the severity.
In my case, at it's worst, life would hardly be worth living if it had stayed the same (sorry to be so melodramatic).
6 months later it's improved enormouusly – but – it's still a problem. I have to…[Read more]