I have triple negative breast cancer and have had four AC and 7 taxol. I've missed 2 treatments due to mouth ulcers and neuropathy. I have three more treatments left but my neuropathy is getting worse. My Onc said last week I might not be able to complete treatment because of this. Am wondering if anyone else has had a similar experience. I'm due for chemo tomorrow but I doubt I'll be able to have it.

Hi @Belleindy I got through the regime you are doing but my oncologist was very clear about wanting to know if I got any tingling. He said right from the start that I was not to worry if I didn’t make it through the full 12 taxol rounds as 12 is just the number they have settled on and they know 9 doses are effective too. He said the trick is finding the balance between giving the drug whilst trying very hard not to leave us with permanent damage. I have friends who didn’t get through all 12 because of neuropathy, it is not uncommon. You may find they lower the dose for a couple. As has been mentioned, you have done the big part of the treatment. My oncologist gave me the stats which I changed to my own language as it’s more simple 😀 - here goes - he said AC represents 50% of the treatment and taxol is 50%, that means each taxol is about 4% which means you have had a good amount now. Not sure I make sense, but I just want to reassure you that it is ok to stop sooner or have a reduced dose. Hang in there. X

Hi @Belleindy Yes, peripheral neuropathy is not uncommon with Taxol. I started to get worried about my feet particularly after dose 9 out of 12. I discussed this with my oncologist who was sympathetic but keen I continue. We agreed to re-assess after each treatment and I decided no more after 11. But I also discovered a lump in my non affected armpit! Long story short, completely unrelated and completely benign, but I had my last Taxol anyway. PN often improves considerably after treatment ends, but it can take some time and not always. I don’t regret taking Taxol but my feet are still a bit weird, it doesn’t interfere with much unless I want to take up running (I don’t!). You’ve already had the lion’s share of your Taxol treatment, cutting the final doses out is not unusual and even my oncologist was happy to cut out the final one of 12 - the purpose is always to give as much chemo as possible so a bit less may be just as therapeutic. Best wishes either way.

I was similar to Afraser. Had taxcel,and around 8th chemo,the tingling in hands and feet’s were really worrying me -I would also,stumble over my own feet from time to time . Made sure I wore court shoes and gym shoes, rarely wear slip on shoes . my oncologist said I had grade 2 PN, and we dropped taxcel to,75% for,chemo,9-10-11 and then to,50% for last one. I then found the tingling of,hands and away and I don’t really think I had much PN in my hands. However a few months later I realised I had numb toes . So I continue to,have odd,stumble when out walking . This has now been compounded by my needing kadcycla/T-DMI chemo,( being triple positive cancer, and not achieving full regression of,tumour at pathology after surgery post chemo 1 and 2., this new chemo,targets the HER2 cells better than Herceptin alone . I’ve just had 6 treatments with another 8 to,go,every 3 weeks . Unfortunately it’s stirred up my PN again , tingling in the hands and some pain in feet . This week I wasn’t happy at chemo,session and ONC nurse got the onc to,pop in . Next time we’ll,look at perhaps dropping to,75% and see if PN symptoms recede . Stopping chemo a option too.at the end of the day I’m thinking I’m more,scared of,having a recurrence of breast cancer from the HER2 ( at present I’m considered to be clear of cancer / no evidence of disease ) than dying from PN so I don’t want to stop chemo altogether BUT the oncologist did say this week oh are you still,driving Which shocked me as I hadn’t considered that side effect of PN- was just worried about balance issues and being to,use hands as I live on my own. I have a automatic car and use ball,of,foot on brake to be honest so believe I’m safe .I’ll be seeing oncologist in 2 weeks prior to,chemo,session for full,discussion .But its a dilemma - the gain from chemo,vs the side effects

Thank you so much that makes perfect sense. I am quite anxious about seeing my Oncologist tomorrow. I'll post an update once I've spoken to her.

I can't figure out how to reply to each of you individually (chemo brain fog) but thank you, your advice has helped and Noosa Blue I hope everything goes well for you when you see your Oncologist. I'll give an update tomorrow after I see my Oncologist.

Neuropathy from Taxol | BCNA Online Network

Mazbeth
Member
4 years ago
Good to hear you are starting to feel a little better @Belleindy. You have completed a lot of the treatment and it is important to avoid permanent damage. You’ve hung in there and got through a big chunk. If you have had your last treatment it’s now time for you to rest and allow yourself to recover. Be kind to yourself, you’ve done so well to have so many treatments when it was really knocking you around. Take care 🌼
Belleindy
Member
4 years ago
I ended up having treatment on Thursday but my Oncologist said it wil be my last otherwise I might have permanent damage. I haven't been well but I'm finally starting to feel a bit better. Still having problems with fingers and toes. I am in Brisbane @Lythe
Afraser
Member
4 years ago
@Lythe

Many thanks!
Lythe
Member
4 years ago
@Afraser I had tingling and numbness in my toes and fingertips but no pain. I sometimes also felt a bit uneven on the ground as you say. I have also seen my acupuncturist when I had extremely painful cording after my mastectomy and auxiliary clearance this year and it made an incredible difference for that too.
Afraser
Member
4 years ago
@Lythe
Another question if you don’t mind. Did you use acupuncture to relieve pain or to reduce odd sensations? I don’t have any pain but sensations on my feet are often very distorted (eg ground seems uneven when it’s not). Many thanks.
Lythe
Member
4 years ago
@Locksley at first I needed to do a few a week for 2 or 3 weeks but then I was able to space them out more. I think all up I might have had 7 or 8 sessions but I noticed improvement almost straight away. At first it would come back before my next session but then it stopped coming back at all and I’ve had none since. When I had to have taxol again this year I started right at the beginning and i didn’t get it at all and I just went weekly while I was having treatment.
Locksley
Member
4 years ago
@Lythe did you need many sessions of accupunture? I have wondered if this would help.
Lythe
Member
4 years ago
I found acupuncture really helped my peripheral neuropathy. I’m not sure where you’re located but if your in Brisbane I’d be happy to pass on his name. He really made a huge difference to me
jennyss
Member
4 years ago
Dear @Belleindy,

from jennyss in Western NSW
Belleindy
Member
4 years ago
I can't figure out how to reply to each of you individually (chemo brain fog) but thank you, your advice has helped and Noosa Blue I hope everything goes well for you when you see your Oncologist. I'll give an update tomorrow after I see my Oncologist.