[JimmyParticipant]

Hi Eva,

Could you please expand on what supplements should not be taken with Velcade as I hadn't heard anything about that? – You say "I was concerned about this and started to read what I could do about peripheral neuropathy. I decided to follow a protocol recommended from the States. It involves Vit B, carnitine, iodine( sea kelp pills), magnesium and zinc, alpha lipoic acid( yes, I know, not as the same time as Velcade, but I'm not on Velcade at the moment), and VitE."

Best wishes,

Jimmy

[JimmyParticipant]

Hi, I've been on Revlimid for three months now after previously having Velcade, Dexa and Revlimid and a stem cell transplant. With the Velcade, I started getting peripheral neuropathy (PN) and tingling in the mouth (the mouth numbness wasn't always associated with the numbing in the hands and feet and could be calcium deficiency – no tests recently).

I've been taking alpha lipoic acid, acetyl L-carnitine, B1, B6, folic acid and a multi B vitamin for the PN and calcium and magnesium for any potential calcium deficiency. Gradually, over about a month, it started to work and now I have virtually no PN or mouth numbing (I thought that calcium and magnesium would be good for my bones whatever, although I note that Eva says some supplements should not be taken at the same time as Velcade).

[JimmyParticipant]

I've found Revlimid tough work too – even though I'm on 10mg the effect seems to be cumulative, each month slightly worse. One month I took two weeks off from the drug instead of one week and that helped. Another angle is that I've found it's really helpful to do whatever I can that helps my quality of life, be it on a banal level – watching light but interesting TV drama series eg Silk, Boston Legal and reruns of Friends – or less frivolously – spending time with friends and eating well – lots of fresh fruit in smoothies – seems to help – as well as resting and reading uplifting or interesting books.

[JimmyParticipant]

I found the Dexa horrible – it completely disrupted my sleep and left me feeling depressed and exhausted when it wore off. After five months of the Velcade/Dexa/Revlimid cocktail and a HDT/ASCT my PP has dropped from 60 to non-measurable and now I'm just on a low dose of Revlimid. Hope you find what you need. I'm taking a high dose of Vits B1 (250mg) & B6 (35mg) and folic acid (25mg to start with then reduced to half that – I got this on prescription) for the peripheral neuropathy from Revlimid – it seems to help to an extent but hasn't got rid of it completely.

[JimmyParticipant]

Hi Helen, I find the Revlimid makes me tired too – I wasn't sure whether to push myself to do things and take exercise, so I tried it but it made me feel worse. My consultant advised me to listen to my body so I've been doing that and sleeping when I need and I feel a lot better – his words also helped me to feel less guilty about having lots of rest and sleep. Best wishes, Jimmy

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