Hi, I was diagnosed with 3cm Hormone positive, Her2 negative, ki67 of 40% breast tumour with no nodal involvement in June. Because of size and my wish to avoid mastectomy I went with neoadjuvant chemotherapy. First I joined a trial for palbocyclib and letrozole but after 1 month, though tumour didn’t grow, 3rd biopsy showed I was in the control as Ki67 was still the same, so my oncologist swapped me to AC-Taxol. 2 weeks into AC, my hair fell out and nails started to change colour. The latter is unusual according to specialist. I got plantar fasciitis week 4 and had to stop walking for 2 weeks : a huge blow - but the rest helped. By the end of AC my toes were so sore! Then I started weekly Taxol. I could barely walk because of my sore toes and residual PF. I keep both finger and toenails very short and finally (when shops opened again) bought a bigger pair of runners! Lovely. With the neuropathy I feel like I’m walking on crushed glass even when I’m lying down, toes numb, toenails very sore, fingernails and fingertips v sore, but the brown cuticle appears to be growing out. Other side effects: anaemia - Haemoglobin of 78 instead of 110-160 (was given blood transfusion last week), wheezy cough, tight chest (ecg and X-ray clear), muscle aches and pains, fatigue. I was so tired after yesterday’s treatment (Taxol week 7) I conked out after dinner, but the wheeze was getting to me so I went for a walk on the beach... and felt better! 😅I’m worrying about how much of the neuropathy and wheeze is too much? How do I know if the Taxol is causing permanent damage? Yesterday the oncologist says it is my call about how much more Taxol I want to submit to given my side effects, but I’ve no idea how to judge my neuropathy symptoms and wheeze, and am worried about changing to CMF for the 5 remaining weeks.

I did try ice therapy. I had my hands double gloved and in jugs of ice during chemo. Feet were in socks with ice packs. I managed to continue with ice therapy for about 4 out of the 12 Taxol sessions and my big toe nails lifted. Was advised I could no longer do this. I painted the rest of my toes with black nail polish. Am off to see podiatrist this afternoon to cut off some more damaged toe nails. I continued on with my hands for about another 2 weeks. After finishing 12 rounds of Taxol.I have PN in my toes that does hurt a bit. Had prexisting Plantar Fascitis which has flared up and had heel spurs that have also flared up. Feet are painful. Finger nails now starting to ache. Good Luck @Kiki_Dances60

I started to get tingling /PN symptoms around week 8 of taxcel - not as bad as what you’re describing. I had preexisting fasciitis (mild) with one foot which flared up daily once on taxcel. Hands affected as well. My oncologist was concerned and after discussion with me , she reduced dosage to 75% strength , with aim to get me to week 11 at least. She said she’d discontinue it if it did not result in lesser symptoms. Luckily that worked for me - symptoms reduced , so I about to have final,dose week 12 on 1st December. Had your oncologist discussed that with you as a option? We all know the taxcel is a important treatment option for us , but PN symptoms will not resolve completely if they get severe so there’s a balancing act between benefits of taxcel,and damage to nerves. My nails on feet all gone , and some on hands have also been affected ( splitting ‘ falling off). I wish I had tried dark nail polish on them before I’d started chemo ( round 1 was AC, taxcel round 2). The nails were sore on round 1, and then discoloured and started to,split later in round 1 . I didn’t try cold treatment

I have just finished my chemo - 4rounds of AC and 4 of taxol. They had to reduce my taxol by 50% for my last 2 doses due to my neuropathy of my fingers and toes . At this stage one fingernail is lifting - think I might lose 9 and some toenails but they will grow back. Hopefully I will regain the feeling in my fingers and half my feet( have to be careful walking) . Break over Xmas - a little bit of surgery January and then 4 weeks of Radiotherapy. Oh and a hormone tablet starting mid January but I’m delighted to finish chemo.

Dear @Kiki_Dances60 I had a rather similar experience with PN and Taxol. I also had discoloured nails - a sort of very light tan on my fingers (smoker’s nails almost, although I don’t smoke!) but my toes were awful - black, grey, chalk white and thickened! My oncologist deemed it a known side effect! Didn’t lose any and they all grew out although one big toenail still gets slight discolourations from time to time.Most PN clears up after treatment but some effects can linger lengthily so I think it’s worth trying anything that might help. Like you, my toes and toenails really hurt a lot, my feet felt numb in some patches and with very distorted feeling in others. I discussed stopping, limped on (not figuratively) for 11 doses but fully intended to skip the 12th, when I discovered a lump under my arm! Long story short, benign tumour that may have been there for ages. But it made me swallow and have my final Taxol dose! I won’t lie, I still have funny feet - no pain, that cleared up very quickly (possibly Vitamin B helped, unlikely to do any harm) but I still get odd sensations. The good news is that my feet are still improving - the rate is glacial but all in the same direction. Many oncology nurses believe that 80% of the dose will still be a therapeutic dose. But it’s a decision you need to think about.I can’t help with the wheeze, I mercifully didn’t get that, but I hope it eases up soon. Best wishes.

Hi, im going through this right now too. Im on my 7th round of taxol and i can barely walk for about 3 days after the infusion.the skin on the soles of my feet is bright red and the skin there and on my toes is peeling off. My hands are puffly and my nails brown. I cant undo packaging now.both my hands and feet i get shooting pains. Oncologist wants to continue as long as possible. Guess whilst i can endure it i will. Like you im concerned about long term. I cant currently crochet which i find depressing.

Neuropathy with Taxol | BCNA Online Network

22 Replies

Kiki_Dances60
Member
5 years ago
Woo-hoo!! 🎉 @Mummy0297 You made it through chemo🥳 You’re a warrior woman: you’ll get through the rest! Happy Christmas 🌲 xxx
Afraser
Member
5 years ago
Hooray and best wishes!
Mummy0297
Member
5 years ago
I have just finished my chemo - 4rounds of AC and 4 of taxol. They had to reduce my taxol by 50% for my last 2 doses due to my neuropathy of my fingers and toes . At this stage one fingernail is lifting - think I might lose 9 and some toenails but they will grow back. Hopefully I will regain the feeling in my fingers and half my feet( have to be careful walking) . Break over Xmas - a little bit of surgery January and then 4 weeks of Radiotherapy. Oh and a hormone tablet starting mid January but I’m delighted to finish chemo.
Kiki_Dances60
Member
5 years ago
Thank you both @Anj_j2020 and @Afraser for sharing your experiences and advice. I also live near the beach so I’ll give that a try. 👌
Afraser
Member
5 years ago
My feet still feel like I’m walking barefoot on hard, ridged sand when I’m not! But glad it works for you. Very good chance of it all clearing up. Best wishes.
Anj_j2020
Member
5 years ago
Hi @Kiki_Dances60
I did some research on neuropathy whilst on Taxol and having some problems. One forum post suggested walking barefoot on sand. Luckily I have a beach close by and began doing this each morning. It didn't cure it completely, but did stop me waking through the night with sore feet. I still have numb legs on some days but finished Taxol on Tuesday. Hopefully all this will calm down now. Apparently it doesn't usually cause permanent damage.
As for wheezing, I have emphysema, but Taxol hasn't caused any problems. Again, the beach helps--breathing salt air.
Good luck! :)
Kiki_Dances60
Member
5 years ago
Hi @noosa_blue150
thanks for that info: I didn’t have black but I’ve a nice dark burgundy - it made me feel better painting my toenails. 🙂 I hope your fingers and toes are starting to feel better now, and you can get back to the ukelele. 🌸
Kiki_Dances60
Member
5 years ago
thank you, @jennyss I like the mitt! Yes, it’s one thing after the other, isn’t it?! Good to hear your hand and foot pain cleared up.
My mother used paw paw ointment for her radiation burns and didn’t have the peeling (but there could be many other factors at play in your case), just an idea! 😬 best of luck with it. 💗
jennyss
Member
5 years ago
Dear @Kiki_Dances60,
My treatment side-effects were very light on - except for feet and hands being sore, blistering and peeling. All healed by six weeks post chemo - but by then my breasts were peeling as a result of radiotherapy! lol - this healed also. Ice therapy helped me during chemo. Below is a photo of my hi-tech ice therapy mitt. Very best wishes for the rest of your treatment.
noosa_blue150
Member
5 years ago
i was told that the dark nail polish filters out the sunlight - and it’s the sunlight reaction with chemo chemicals that make the nails discolour and then split/fall off. Certainly worth a try ! My nails started getting very tender during AC chemo ( couldn’t play ukelele for weeks) and then during taxcel,chemo all the nails on feet lifted off . Have only lost two,thumbnails so,far but another 2 nails are looking as though they’ll split/ lift off as well.

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Neuropathy with Taxol

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