[dianaiad]

Peripheral neuropathy and Velcade

by dianaiad on Mon Jun 03, 2013 3:59 pm

Ok, how much of this is 'too much,' that is, when should I begin to worry about it/bring it up? I'm about to start week nine of Velcade subQ, and although I have had some very minor increase in 'tingling' in my hands, I've had no problems with my feet, and the hand tingling would hit, then go away...not be bothersome at all, really. By day three after the injection it would disappear, until this last session. Now the tingling is almost constant; not painful, but just always there. It did not disappear...I have another injection round tomorrow and I still feel it as I type.

The question is; when should I be concerned? I am a little reluctant to bring something up to the doctor, since the last time I mentioned a side effect that was bugging me (dizziness and 'blind staggers" a couple of weeks ago that have mostly gone away,) his reaction was dismissive. "Don't fall" was his comment. Not 'don't worry, this is normal/expected, just be careful,' just 'don't fall,' in a dismissive 'what a stupid question to ask' sort of way.

I've made a discovery about myself; I can be mother witch when it's someone I love I need information about. If it's my kids, no doctor is going to push me around. It seems to be different, though, now that it's ME, and that's just plain weird.

Now I know I have communication issues with this man...but I AM stuck with him. So, before I brave the lion's den again, SHOULD I say something? Should I wait? What should I wait for?

[Nancy Shamanna]

Re: Peripheral neuropathy and Velcade

by Nancy Shamanna on Mon Jun 03, 2013 5:09 pm

Hi Dianalad, You should definitely bring up the topic of neuropathy with your oncololgist. I should think that they would be asking you about it, at every app't actually. It needs to be monitored, since you want as little as possible of the neuropathy to be permanent. I still have a little of it in my feet, four years later. The nurses and doctors always asked, when I think back on it. I credit them with steering me through all of the treatments with as few side effects as possible.

I was lucky in that I was only on Velcade for about four - five cycles (four I think). The Velcade in those days was only given intravenously, and the medical people were well aware of the neuropathy, and tried to keep me on the drug for as short a time as possible.