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),…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]