[MrPotatohead]

Does everyone on Velcade get peripheral neuropathy?

by MrPotatohead on Thu Jun 25, 2015 2:50 pm

I am wondering if PN is an inevitable consequence of being on Velcade. Has anyone been on it without getting this side effect? I just got switched to the subcutaneous injectable version after flaming out on Revlimid. I have so much pain from bone damage that I am really worried about a regimen that will add yet another source of pain.

[tmcd]

Re: Does everyone on Velcade get peripheral neuropathy?

by tmcd on Sat Jun 27, 2015 9:55 pm

Simply, the answer is no. I have had no neuropathy whatsoever since I started treatment (Velcade included) in Dec 2014.

Not that it has been a totally trouble free ride, but neuropathy has not been a side effect.

I think the one thing I have learned about all this is that nothing is the same for any two multiple myeloma people. Lots of parallels and similarities and commonalities, obviously, but no sure things.

[cdnirene]

Re: Does everyone on Velcade get peripheral neuropathy?

by cdnirene on Sat Jun 27, 2015 11:36 pm

I've had 9 cycles of Velcade and started to develop PN in the second cycle. It's tolerable and I'd say I feel more numbness than pain. I can't tell without looking for example if I'm wearing socks or if my feet are bare. I understand that the results can be reversible but that it takes a long time.

[JPC]

Re: Does everyone on Velcade get peripheral neuropathy?

by JPC on Sun Jun 28, 2015 9:09 am

Good morning:

I have researched this and discussed this with several doctors and nurses. With IV Velcade, the top end of PN scale was seen, and a small number of people got grade 4 PN, and could not continue with the treatment. With subct Velcade, almost no one gets grade 4, it tops out at 3, and its very rare that you have to stop it. The average is grade 1. You can assume at the start that you will get grade 1 with subct, and go from there. Very likely it will be tolerable, but of course, everyone is different. With 5 rounds of induction RVD late last year, my wife got grade 0 PN. She felt tingling but not obvious pain, and it came and went.

Interestingly, the oral Velcade, Ixazomib, reports to have lower PN, but is more active for GI issues. In early tests, it is reported to be at least as effective as Velcade (maybe slightly better). I am not sure if its yet available for front line treatment. Hope this helps.

By the way, get the cocoa butter, and apply it before the PN starts, and at the very first sign of PN apply it more. Many people report that works very will on the PN.

[gmarv]

Re: Does everyone on Velcade get peripheral neuropathy?

by gmarv on Sun Jun 28, 2015 5:16 pm

I was on Velcade with Revlimid and dex for two years. I did get a mild case of PN, I have a burning sensation in my feet when I get still. I have stopped the VRD treatment, been drug free for 10 months now. I still have the burning sensation in my feet but it has gotten less over time.

[MrPotatohead]

Re: Does everyone on Velcade get peripheral neuropathy?

by MrPotatohead on Mon Jun 29, 2015 8:23 pm

Thanks, everyone. Getting access to real world experiences is what makes this forum so valuable to me.

Seems that Velcade and PN have a close partnership, but that the subcutaneous version is less close, while the oral option is the best. So many treatments to choose from and so many side effects! I guess I'll stick with the subcutaneous Velcade, but shall monitor it closely with a stick of cocoa butter in hand.

Thanks again everyone for all the great info!