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Debbyd's avatar
Debbyd
Member
8 years ago

Neuropathy

Hi I have been on  pacitaxel for 10 weeks and have been told to stop it even tho I only had two weeks to go due to face numbness and tingling in fingers and feet. my oncologist says it’s uncommon to get the face numbness so she is sending me off to have a MRI brain a little bit worried has anyone else experienced this

5 Replies

  • I had Docetaxel, but had numbness and tingling in my tongue and lips for the first two weeks of the three weekly doses. Made spitting out toothpaste and mouthwash interesting.
    I had more like pain in my jaw and gums.
  • I agree it's not uncommon at all, I have neuropathy in my feet and I also had tingling in my face. I still get the tingling strange feeling in my face from time to time, it doesnt last so haven't worried, but I remember thats when it started. Half the time the Oncologists don't know the side effects or the diversity of them really as everyone is different. xx M
  • It's not uncommon. I had numbness and tingling in the fingers, burning, pain and bits apparently not present in the feet  but no impact on the face. With 10 doses out of 12, you have probably had a therapeutic dose anyway, which is why your oncologist is stopping the treatment. Neuropathy usually reduces over time, but it can take quite some time. Hard to know what will help - Vitamin B was suggested by my oncologist's nurse as a "might help" and I think it did. Check with your oncologist first but it's unlikely to do any harm even if it doesn't help. Sounds like your oncologist is being thorough, and not brushing your symptoms aside, which is a good thing. Bit unnerving I know, but best to check. Chances are it's just the wretched taxol! Best wishes.
  • Hi there @Debbyd , yes I developed peripheral neuropathy in my hands and lower legs and feet. Also had numbness and tingling in my lips and the tip of my tongue. Also, strangely in my nether regions, a strange sensation that I had my panties or toilet paper stuck between my bum cheeks. I had (and still have) a terrible relationship with my oncologist. Ice Princess Supreme, and definitely, shall we say, "on the spectrum". Absolutely no people skills whatsoever. She delayed my last AC dose by eight days and then cut the dose by 20% with absolutely no consultation with me or negotiation. The result was, when I started developing the neuropathy on the paclitaxol, I never said a word until the very last drop of chemo went into my port, then I said, "Well now that's done, I might mention the following..." Probably not the recommended course of action, but I was buggered if I was going to let her make further decisions about my body without at least discussing it with me. I finished in March and now only have it in the fingers and my legs, but I'm happy with my choice to have the full dose.
  • Hi @Debbyd
    I have Neuropathy from Pacitaxel I only got 6 weeks in before it became extreme, Now I am 5 years out and still have problems, it didn't effect my face. I am glad you Oncologist is being thorough. best to check things and eliminate them. 
    I have no evidence of disease now so even although we had to change my chemo regime it has worked well. 
    hugs 
    SoldierCrab