Forum Discussion

Kiki_Dances60's avatar
5 years ago

Neuropathy with Taxol

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.

  • 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.