Numbness with Chemo and whether to change dose

Hi Mrs Woodentop,

I had quite a lot of leg pain and numbness from the same chemo. I stumbled a few times but put it down to not looking where I was going. When I told my Oncologist she decided to drop one Paclitaxel to see if things improved, which they did. I raised the concern of missing a chemo dose and she told me that Paclitaxel only does about 25/30% of the work, the main Chemo to have is the Carboplatin. I asked about having it after and she said it wouldn't be necessary. 

I took strong painkillers to help with the leg pain, the numbness was intermittent. I'm 7 months on from my last Chemo now and I still get a little numbness but only in my right hand and not all the time. Usually it's late evening and if I've used my hands a lot during the day ie: knitting or gardening. It doesn't last long and is liveable.

Hope my reply helps.

Sue

Hello  I had 6 cycles of carboplatin/paclitaxel. I had pins and needles in my fingers and toes, plus some numbness in my toes. The first couple of cycles I also had burning sensations inside my feet but not after that. They debated whether to drop the last dose, saying that the paclitaxel had probably done its job in the 5 doses. He said that if the symptoms spread into my foot and up my leg, or into my hands and up my wrist he would either alter the dose or stop the treatment. In the end the symptoms didn't go that far and they decided to give me the last dose anyway.

21/2 years on, I occasionally get pins and needles/tingling in my fingers, plus if it's very cold the skin goes really white and pale. Similarly with my toes. Sometimes I feel  like I've caught my foot on the path (stumbled) when I'm walking. My chemo oncologist told me that whatever symptoms of peripheral neuropathy I had 6 months after  treatment I'd probably have for life. The symptoms did gradually decrease over 6-9 months. Like Sue  () I experience them more if I've used my hands a lot (e.g. after  knitting or typing), if I'm physically very tired or if it's cold. They don't stop me doing anything I want to do. The problem is that because we all react slightly different no one can accurately say how much you're likely to be affected in the long run. Your symptoms could stay the same or they could worsen so if you and they decide to go ahead you'll need to be closely monitored. I hope that you and your team can come to a decision you all feel happy with. x

Hi Sue,

Thanks, that really helps. My oncologist didn't explain that about the Paclitaxel, that's reassuring that the carboplatin does most of the work. 

It's good that your numbness has mostly gone after 7 months too.

If he says we are dropping one paclitaxel I will ask about resuming for the last one.

Thanks again x

Thanks Fairycake,

Its interesting what different oncologists advise. Mine said if it spread down the rest of my fingers, not just the top, he would drop the paclitaxel.  When we discussed it, it was left fingers and toes only, now it's both sides, so obviously increasing.

Knowing the experiences the 2 of you have had will help me with what to monitor myself for and whether to press for another paclitaxel. 

I am in the middle of the second cycle of my proposed 4 carbo/paclitaxel, so will see how it goes for the rest of this cycle too.

Thank you x

Hello Mrs Woodentop,

I am Stage 2 Grade3 papillary serous  & I was diagnosed 2015. My treatment following the hysterectomy was carbo/taxol & it was originally planned that I should have six rounds of chemo, but it was decided by the Oncologist that they would stop at 4 doses,which they did. I was concerned as to only having the 4 doses ,but he assured me I would be ok. I have had neuropathy predominantly in my toes & I still have this problem although it has not prevented me from doing anything. I have found that if it keeps me awake then I wear a small pair of socks which appears for some reason to help the situation.

I hope that the remainder of your treatment goes well for you. x