What SEs made you/your MO stop weekly Taxol?

JaBoo
JaBoo Member Posts: 520

I'm recently on Taxol, no. 5 yesterday, and getting some neuropathy in my feet (burning, comes and goes), in my legs (numb feelings in various spots, just on days 2 and 3) and after garden work my fingertips were burning. Otherwise, nothing much. Weird taste in my mouth. Blood work and heart OK

My MO is talking about stoping the weekly Taxol. I would be on Herceptin only.

BUT I'm scared of stopping so early! I had extensive LVI and KI67 of 65%...

How to decide when the side effects are too much? I want to see my kids grow (just preschoolers now!)... even with neuropathy, I don't want to face reccurence or mets.... you understand certainly.

Comments

  • Legomaster225
    Legomaster225 Member Posts: 672
    edited October 2018
    1. I don't know the answer to your when to stop question but have you tried icing your hands and feet during infusion? That really helped me. I used iced bags or frozen water bottles for my hands and had booties I bought on amazon for me feet. I did not have neuropathy. I might have just gotten lucky but I'd like to think it made a difference. It's worth try if you have not been icing
  • JaBoo
    JaBoo Member Posts: 520
    edited October 2018

    Yes, I'm icing my hands and feet from the very 1st infusion...

  • beauz
    beauz Member Posts: 207
    edited October 2018

    Hi Jaboo. MO stopped my weekly taxol after #7 concerning my neuropathy. But I don't think my neuropathy was that bad with feeling of a thick pad under my foot. I think the real reason for stopping was my low neutrophils. It dropped too low after #4 and took three weeks to back up. MO then reduced my dose by 15%. But it dropped below chemo cutoff level again after #7 and stayed there for two more weekly blood tests. MO called it quits. He refused to prescribe me white blood cell boosters to keep me going. I was willing to move on from chemo as it had dragged on for too long. My surgeon said taxol should have done its job by then anyway. I remember at least two other members from my chemo time who didn't complete full course of taxol. But we are around 60 years young and ER+/PR+ only. If you read weekly taxol thread you may find more cases of stopping early or on reduced dose. I wish I could complete the full course of taxol. Good luck.

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited October 2018

    JaBoo, I hope you don't mind my chiming in here, even though our stages are different. My suggestion is to describe your symptoms very precisely to an oncologist who has a lot of experience, and ask her/him to say when it is time to stop. When I started weekly Taxol my onc said I would be on it four to six months. My three-month PET-CT scan showed no metabolic activity, but we decided to continue. After five months, upon my describing what the neuropathy was like at that point, my onc said we should stop, so the neuropathy would not become permanent. It was starting to change from some numbness and tingling to pain. I think my onc had the experience to listen to my symptoms and judge how safe it was to continue. She knew by my description that I was probably at the point where it was best to stop. And indeed, the neuropathy did go away after a while. Of course, we knew we were probably not going to get a cure in my case, and quality of life was a major consideration. In your case, you have had some chemo already, and you are getting herceptin. Herceptin is such an amazingly effective drug. So if you decide to stop, hopefully you can get reassurance from that. Ask your onc to explain her/his thoughts on risk vs. benefit of continuing Taxol.

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