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Shelley_H's avatar
Shelley_H
Member
2 years ago

Pacletaxil & Peripheral Neuropathy

Hello ladies, 
I'm wondering if anyone had peripheral neuropathy (PN) whilst having weekly pacletaxil where it became so bad you stopped early? I've completed 4 x AC fortnightly & started weekly pacletaxil on 20/12/23 planned for 12 weeks, post lumpectomy & axillary clearance for PgR & ER+ BC with 4/30 positive lymph nodes. However last Wednesday which should have been no 10 my oncologist graded my PN as a 3 & has paused tx for a week to see if it improves. My nurse coordinator discussed stopping chemo as I also developed a jugular DVT from my PICC, which I had removed.
I'm now torn between finishing the last 3  chemo sessions, stopping due to the PN & the potential of some of this being permanent verses what if I don't complete the 12!
Obviously I will discuss this with my oncologist & thought someone on this site may have a similar experience.
Thank you for reading & happy Sunday to all the pink ladies out there 🩷
chemotherapy-side-effects
peripheral-neuropathy

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  • Afraser's avatar
    Afraser
    Member
    2 years ago
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    I developed peripheral neuropathy on Taxol - it’s a known side effect. I was keen to stop after dose 10, my oncologist wanted to go one more. Discovering a lump under my arm (it turned out to be entirely coincidental and entirely benign!) altered my thinking somewhat and I soldiered on to the end! But for many, including all my oncology nurses, 80% of the recommended dose may still be a therapeutic dose, so certainly worth talking about that option with your oncologist. While I no longer have any pain, I still have damaged feeling in my feet a decade later. As I am so far NED, it’s probably a fair trade but PN is worth taking seriously. Many recover significantly once chemo stops. Best wishes. 
  • Keeping_positiv's avatar
    Keeping_positiv
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    2 years ago
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    I got to the end of the recommended 12 on Paclitaxol.  I always reported any numbness as I was warned it can continue a little more after the 12 sessions.  The last thing I wanted was to end up not being able to drive my car because I can't feel my feet!

    I have some neuropathy in all on my toes, but not debilitating, just a weird feeling.  Having the break is probably a good thing as suggested by your oncologist.  Reporting any neuropathy is the best way to go, and keep in mind that getting to 10 sessions of Taxol is common from what I hear.  Wishing you all the best.


  • GinGin's avatar
    GinGin
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    2 years ago
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    @Shelley_H,
    I have very similar chemo treatment as you. 4 xAc every fortnightly and 12 weekly Taxols. I am hormone +, Her2-. 2/13 lymph nodes positive and axillary clearance. 

    Had to skip the last taxol as my neuropathy escalated after the 11th taxol. My feet was extremely painful every morning and I had pins and needles on both feet ( not just toes).Some of my fingers are also affected. It’s 6 weeks since I have completed chemo. Both my feet are still numb. My oncologist was glad I managed to complete 11 taxols. In his opinion, if patients can complete at least 8, it is a good outcome (weighing the benefits vs risks). He says the treatment isn’t just solely chemo. There’s still radiation and meds which I will have to be on. And advised me against doing Taxol 12. I am glad I listened as I am still trying to manage the neuropathy today.

    p.s, I am currently in midst of radiation treatment.

    hope your neuropathy improves 
  • cranky_granny's avatar
    cranky_granny
    Member
    2 years ago
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    Hi @Shellie_H 
    I am nearly 7 year post initial treatment finishing 
    i had to stop the taxol at  round 8 due to the neuropathy my toes are still funny along with the fingertips. Plus the nails are streaky. I hate to think how much worse they would be if they didn’t stop when they did. 
    Though i have mets I keep away from the what if’s 
    and get on with my ongoing treatment. There are no 100% guarantees in anything in life. We just do what feels right for ourselves at the time. 
    Not going to lie. There are days I feel like chucking 
    It in then i pull myself up (usually jump on here and check out the funnies and wise words.)
    don't always post much but i do try to be an optimist and look for the bright side. And if the glass is half full i top it up doing anything that gives me pleasure. Takes my mind off the side effects for the most part 
    Follow what feels right for you and never regret your choices you make them based on what is there at the time.