Myeloma Forum | JimBignell | Activity https://forum.myeloma.org.uk/members/Jdax/activity/ Activity feed for JimBignell. Thu, 23 Apr 2026 02:24:08 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 a7b80bf99064344be1615fd09f343365 JimBignell replied to the topic Velcade induced Neuropathy in the forum Side-effects http://www.myeloma.org.uk/forums/topic/velcade-induced-neuropathy#post-104210 Tue, 13 Sep 2011 21:05:02 +0100 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]

]]> 2dcae8d7d88a6dbbec8ce6fc6877b0f9 JimBignell replied to the topic Queen's Hospital Burton Suport Group in the forum General http://www.myeloma.org.uk/forums/topic/queens-hospital-burton-suport-group#post-91160 Mon, 12 Sep 2011 20:42:06 +0100 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

]]> d891893144f2ac29352a0b5effe3f33c JimBignell replied to the topic Another Newbie!! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/another-newbie#post-84015 Thu, 25 Nov 2010 20:03:35 +0000 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]

]]> fc2796da3621446767ad866e840d7233 JimBignell replied to the topic Michael suffers with this in the forum Side-effects http://www.myeloma.org.uk/forums/topic/michael-suffers-with-this#post-103607 Thu, 11 Nov 2010 12:47:23 +0000 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]

]]> edbc9354d68d8fc99aabc24569c7c748 JimBignell replied to the topic Discussion forum categories... in the forum General http://www.myeloma.org.uk/forums/topic/discussion-forum-categories#post-88766 Wed, 10 Nov 2010 18:26:17 +0000 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]

]]> 10970351a0691c387cbcc12f145abc93 JimBignell replied to the topic Discussion forum categories... in the forum General http://www.myeloma.org.uk/forums/topic/discussion-forum-categories#post-88760 Fri, 05 Nov 2010 16:28:04 +0000 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]

]]> 9397860eb1ee1727da992e82fa1450da JimBignell replied to the topic Michael suffers with this in the forum Side-effects http://www.myeloma.org.uk/forums/topic/michael-suffers-with-this#post-103605 Thu, 04 Nov 2010 15:44:17 +0000 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]

]]> a1a71a3216372fc4e3ff7d86cc5565b8 JimBignell replied to the topic Michael suffers with this in the forum Side-effects http://www.myeloma.org.uk/forums/topic/michael-suffers-with-this#post-103603 Thu, 04 Nov 2010 15:37:49 +0000 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]

]]> c5035cef69074c4e3c6641ac747e950a JimBignell replied to the topic Michael suffers with this in the forum Side-effects http://www.myeloma.org.uk/forums/topic/michael-suffers-with-this#post-103601 Fri, 29 Oct 2010 15:42:50 +0100 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]

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