[rrmoorheadParticipant]

I have had 4 cycles of V C D and my consultant has stopped my treatment to give me a break from the N P that I am currently having in my feet and calves. Is there anybody that give me some advice on managing the P N. It is there constantly and I get very little sleep with it.

[robert0439Participant]

Hi there,

I’m sorry to hear that you are suffering from PN as I am also suffering from the same issue. I had 2 cycles of VTD  but suffered from servere stomach pain where I ended up in A&E, so they took me off the thalidomide all together.

Even after one cycle I started to feel issues with my thighs, calves and feet where they were feeling numb and tingling. After 2 cycles I had to give up on the Velcade and they put me on Revlimid which I coped with far better. I ended up having a total of 5 cycles before I had my stem cell mobilisation and then stem cell harvesting.

It was definitely the Velcade which caused me to have PN and although my thighs and calves are now back to normal, my feet are still pretty bad and as such, I struggle to walk any distance. I did some research on Velcade and PN from this is a known side effect.

Originally, I tried all sorts of treatments from massage, hot water bottles, and ice packs but nothing seemed to work. I raised this with the hospital where they prescribed me with Gabapentin, where I take 900mg per day (1 x 300mg tablets morning, afternoon and night) and also, Duloxetine where I take 120mg per day (1 x 60mg tablets morning and nigh). They have helped a little where I can now sleep through the night, but my feet are always cold as though there is limited blood circulating. I was hoping for far better results as the PN has now been going on for 6 months.

I am told that it can take some time for any normality to return and in some cases, it never does. I guess I now try to block out the pain as much as I can, but it’s always there.

In 10 days time I have my stem cell transplant where afterwards, there is quite a long recovery time. If the pain is still there following this, I will look to see if I can find anyone out there in the medical profession who can help, even if it means paying for it.

I wish you well and the drugs which I take that I have mentioned above, may help you to manage your issue far better. Good luck anyway.

Regards,

Robert

[paulapurpleParticipant]

I had PN too with Velcade. VTD didn’t work for me so I only had three cycles but the PN has stayed with me. Rcently I have had DT PACE with large doses of Thalidomide, which has increased the PN. I mainly get it in my hands and feet. I find that being on my feet helps, rather than sitting. My hands bother me more as even typing can be difficult sometimes. I deal with it mainly by distracting myself and keeping as busy as I can.

I suggest you join, if you haven’t already, the UK Myeloma Support group Facebook page where you will reach a larger audience and receive more answers to your question.

Paula

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