[AmelieParticipant]

Hi everyone!

The day before yesterday I called Celgene, and yesterday the director called me on his cell phone from his holiday to answer my questions! Impressive service, I must say! 🙂

The reason why they have withdrawn the application for approval of Revlimid for maintenance and 1st line treatment is following. The trials with Revlimid have mainly focused on progression free survival and it is too early to say anything on overall survival, but EMA requires also evidence for improved overall survival.

I am glad that the slightly increased risk for secondary cancers were not the reason – that would really have been stupid. But well – it still means we cannot get it as easy as if it was approved 🙁 In my opinion they should approve it even if it doesn't improve the overall survival. One would rather prolong the life time in the beginning of the process where the general health might be stronger, than later when one is maybe anyway doesn't feeling well anymore. And most likely it does also improve overall survival.

Love
Amelie

[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]

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

[EvaParticipant]

Dear Jimmy,
My information is based on my reading, not on any negative experiences I've had. I've read various papers and also forums which included patients from the States. However, I think you should ask your haematologist/oncologist whether it is true that certain supplements are not a good idea with Velcade.

The supplements I've read about are green tea, alpha lipoic acid and very high concentrations of Vit C. My impression is that some patients who are using Velcade keep off these supplements for a brief time period before and after their Velcade infusion. I think it's ok for you to use my post to alert you to a possible problem, but the final decision should be made in consultation with a doctor. You could also ask a myeloma nurse specialist.

Best of luck with your treatment,
Eva

[AmelieParticipant]

Just wanted to let everyone know that John is doing well after his 2nd sct which took place in August. It was much easier than first time and he feels better now than after the first since he has no skin troubles like last time. He is working full time. Hope this can bring some hope to those of you who are facing the 2nd sct.
Love Amelie

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