Just wanting some advice. Is anyone able to tell me their experience during Taxole treatment and if they have experienced neuropathy and if so did it improve after treatment was ceased.

I started with symptoms of peripheral neuropathy about half way through my 12 week cycle of taxol. Fingertips and toes to start with. First it was just tingling but then full numbness in the fingers, (worst in thumbs and the next two fingers). Toes all numb and spreading up to the ankles. When walking, my feet feel like I have thick car washing sponges under them, and walking is sort of spongy. I also have slight tingling and numbness in my upper lip and tip of tongue. I must admit I downplayed all this to my team, as I was petrified they'd reduce or postpone my treatment. I'd rather go into my coffin years later with velcro fastenings on my clothing, or Nanna pull up pants and trackie tops, than drop off my perch earlier wearing buttons. But, this was my own personal choice, and I'm not for one minute saying anybody else should do the same. I only finished this part of my treatment four weeks ago, and it's still much the same, but hopefully will improve somewhat with time. If not, well I live with it.

I did have neuropathy and yes it did improve after treatment stopped. The effects are very variable so one person's experience may not help a great deal. Most people experience neuropathy at a nuisance level - difficulty with buttons, stumbling sometimes. Some may get it more seriously. My hands weren't too bad and I could manage everything, but my feet got much worse, painful and problematic. My fingers still have a tiny rim of reduced feeling (it's now four years) but hardly noticeable at all. I think my feet will be permanently affected - no pain (that stopped pretty quickly after treatment) but ranges from almost normal to the "wearing two pairs of socks" feeling to hobbit feet - over sized and furry!Mercifully I was never a runner, which is about the only thing I can't do as my connection with the ground feels too uncertain at speed! Worth taking trouble to avoid if possible (the neuropathy not the Taxol - I didn't like it but trusted my oncologist) - oncology nurses can advise. Soaking in iced water helps some, I found Vitamin B beneficial rather late on, might have been even better if I had started earlier.And you may have no problem at all!! Best wishes for your treatment.

I finished Taxol on 24 Feb. I started to get a bit of neuropathy about round 8 in my fingers & numbness in toes. I finished 12 rounds & everything is back to normal now. I had acupuncture once a week & also reflexology. I don't know whether this helped but certainly didn't suffer too much. I also did a lot of exercise. I found the numbness in toes was worse when sitting for prolonged periods & tight shoes. There were 4 of us having Taxol at same time with varying degrees of neuropathy. 3 of us finished the whole treatment. Don't worry about it until it happens, it may not. Good luck!

I also went on a course of Taxol. I was warned by my oncologist that I may experience neuropathy. She also wanted me to tell her if it it became difficult as sometimes effects can be permanent . I could only get up to session 10 out of 12 because I had trouble walking. Now months later it has improved but limits my activity. I no longer have problems with my fingers.The oncologist said not to worry if I had not completed the full course as many people have the same problem. So some people have no problem others do. I had chemo prior to surgery. It was a complete success and only needed a lumpectomy.

I think 85% of the full 12 treatments is considered a therapeutic dose ie likely to get the desired result as much as 100%, so if neuropathy is bad it's worth considering stopping if you have got that far. I planned to do so too, but then found a lump under my other arm! It wasn't a problem but hardened my resolve to see the full 12 treatments through. My feet didn't get any worse and no regrets.

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14 Replies

Tanba
Member
9 years ago
My chemo finished in october 16. Ac/taxol. My hands & feet still numb.
Anonymous
9 years ago
Great to hear that you've finished chemo. :) I think they should have ice cooling for hands and feet and they should be promoted by oncologists. I have peripheral neuropathy over 2 years after finishing Taxol. I still get stabbing/ shooting pains in my feet and tingling. I have found that when I've had an anaesthetic it gets worse. I don't regret having chemo though. This is one of the worst side effects of cancer treatment for me and affects me every day.
poodlejules
Member
9 years ago
I too have just finished my 12 weeks of Taxol . I'd read about Taxol treatment and neuropathy and decided to ice my hands and feet whilst having treatment . I'm pleased to say 2 weeks post treatment I only get slight tingling in one finger and I'm hoping this will go away . I guess I'll never know if I was going to get it or not but I think the ice helped .
Renee73
Member
9 years ago
Thanks Ladies for all of your comments and helpful information. I went ahead and have completed 12 x Taxole, finished last week, and have mild neuropathy in my fingers and toes. I guess it is just a waiting game to see if sensation returns; but a small price to pay in the bigger picture. Best of luck to those of you who are undergoing treatment. Cheers Renee
Ret65
Member
9 years ago
Hi Renee I had Taxole. I had a bit of neuropathy in my fingers but that has resolved. I also got some in both feet . I have no feeling on the balls of my feet and no feeling in some of my toes. This has not improved in the two years since I finished chemo. However, it's not too bad, I just need to think about my balance a bit more, and not take it for granted when walking on uneven ground. Cheers Loreto
primek
Member
9 years ago
I developed some neuropathy in my toes and some balance issues. 8 months on...no balance issues and toes only bother me if my feet get really cold. I was able to complete the treatment.
Kat09
Member
9 years ago
@Renee73 I've just finished round 4 of my 12 Taxol hits and have noticed just a little numbness more like a tingling sensation on the end of my pointer finger so texting ect is a bit weird for a few days and my thumbs are a little sore in the joints. I also have a feeling like something is brushing against the back of one of my ankles occasionally ( weird ) but this also is only intermittent, hopefully both stay that way. The side effects for me so far seem to be fairly minimal thankfully, but I think this time the muscle and joint pain has kicked in a little more. Perhaps more so due to being given the Herceptin also? Did anyone else find that with their treatments?
EarthWalkerLish
Member
9 years ago
@Renee73 I wasn't on taxol but I had 4 x AC Chemo which I finished end of October last year and I have neuropathy in my fingertips. My feet aren't affected like my fingers are, though they ache off and on they don't have pins and needle like my fingers. They are very tingly all of the time. I still have some kind of feeling in them but mostly they are tingly. Lisha
melclarity
Member
9 years ago
@Renee73 I finished Taxol 16 months ago now and had neuropathy in my feet and toes, when I walk longer than 30 mins my toes still go numb and really hurt. They are better than what they used to be I believe and fingers I noticed no problems at all, little tingling but fully resolved. Hugs Melinda xo
Afraser
Member
9 years ago
I think 85% of the full 12 treatments is considered a therapeutic dose ie likely to get the desired result as much as 100%, so if neuropathy is bad it's worth considering stopping if you have got that far. I planned to do so too, but then found a lump under my other arm! It wasn't a problem but hardened my resolve to see the full 12 treatments through. My feet didn't get any worse and no regrets.