Quitting Taxol Advice?

ninastar · May 2011

Hi again ladies!

Mom is through 9 out of 12 Taxols, after her 4 A/C's. Experiencing numbness all the way down her fingers now, with numb feet, fingernails turning black and Toenails lifting. The numbness got much worse in the last week. She is tripleneg, but as you can see no nodes and no evidence of tumor or metastasis after surgery, so this dose dense 4 A/C and 12 Taxol was above and beyond preventative, more because of the Triple Neg status. Our question is, in your opinion, should she entertain the idea of skipping the last 3 Taxols, for fear that this neuropathy could get worse or be permanent, or are the last 3 treatments really important statistics wise to preventing recurrence?

Your 2 cents is always appreciated, to take into the whole picture when making these tough decisions.

Love and strength,

~nina

Luah · May 2011

Nina: The nail issues are very common and should resolve gradually following treatment. As for the neuropathy, what does her onc say? I think only she/he can advise on the risks of serious damage and whether those risks outweigh the benefits of the chemo. I'm sure it's different for everyone.

Suze35 · May 2011

Nina - ditto with Luah on the nail issues. I had a little bit of nail problems, but 3 months out they are much improved.

Perhaps her doctor can switch your mother to Taxotere for the last three treatments? I have heard it is easier on neuropathy, and similar to Taxol. If not, perhaps reduce her Taxol dose?

As for stopping altogether, it is hard to judge that, especially since her response can't be evaluated. I think at this point, you have to weigh the risk of permanent neuropathy with the risk of stopping the chemo, as Luah pointed out.

Good luck to her!

minxie · May 2011

tough one ninastar. I too entertained thoughts of stopping the Taxol about a third of the way through. The neuropathy and exhaustion got worse and worse with each dose. But now, two years out, most of it is gone.

I think only her oncologist can advise what would be best. But if there's any way she can force herself through these last few weeks, she should try - hit TN with everything they've got.

christina1961 · May 2011

I'm sorry your mom is going through all that. I am on Adriamycin, Cytoxan, and Taxotere and have had numbness in my left hand only but I am on a three week cycle with everything given all at once. I am going to see a physical therapist tomorrow and maybe I will know whether or not it is neuropathy or from the swelling from the taxotere. It does tend to ease up a bit between treatments but with each treatment it seems to have gotten a little worse.

I can't advise anyone on what to do, but I think I am going to take my chances even though I have to type in my profession. I am just too afraid of ever having to deal with this crap again. I may or may not have had positive nodes - I'm doing neoadjuvant chemo and had a swollen node but it has gone down to normal. I am getting radiation also even if I go with a mastectomy even though I've had one oncology surgeon say I don't need it if they don't find positive nodes. I just want to do everything I can to live.

ninastar · May 2011

Thank you all for your words, it certainly helps to get as much info and insight as possible. I'm sometimes skeptical and weary of just following the doctor's advice. They are all so different from one to the other, and it's a job, they go home at the end of the day and we are the best advocates of our own health care. They told her to ice more and see what happens next week...

mrsnjband · May 2011

My neuropathy was getting bad on taxol & they switched me to taxotere. The taxotere made the neuropathy even worse, plus I was dizzy & pain 24/7. I would not recommend switching to taxotere. I don't know if they will do this during treatment but why can't they give your mom something for the neuropathy? I could have probably toughed out 4 more treatments if they had.

The nail issues will resolve once the treaments ends. I only have a small problem with one toenail. NJ

LRM216 · May 2011

I had the same treatment as your Mom only my taxol was DD x 4. I developed neuropathy right after the first treatment of my feet, and all my fingertips. I am a legal assistant and type all day long, so this was a real hardship. My onc didn't like it at all and switched my remaining 3 doses to taxotere. It is easier on the neuropathy, but it was a horror, at least for me. I wanted so badly to quit it, but my onc kept my nose to the grindstone and I made it to the end. Also worked everyday throughout it, other than the day of infusion, and that was no easy feat, believe me. I was 62 at the time, so I was no young chicken either. I am so thankful now that I didn't quit and saw it out to the end. My neuropathy never worsened, remained as it was from the first taxol up until about 3 or 4 months ago, it finally dissipated greatly. Fingers are fine, but toes are still a bit numb. Oh what we go through to stay alive. I wish mom all the best. Tell her to hang in there, and talk to the onc about switching over to the taxotere. They are basically twin drugs.

Linda

yellowdoglady · May 2011

As others here have heard, I had to tape down my nails so as not to lose them.

I would say that sticking with the agreed program will give the best result your doctor can give you. Keep the docs aware of any issues, I did Taxotare and Cytoxen for months it seems..

pennylane · May 2011

I was triple neg, 1.7cm, node neg and my treatment was 4 dose-dense A&C....this was a little over 5-years ago (at MSK) and at that time taxanes were not automatically recommended for early stage bc even if it was triple negative...I have seen a few other women from that time frame who did this abbreviated treatment...and who are fine (knock on wood)...JUst posting this in case your mom is curious about this scenerio and of course to send my best wishes to both of you, Yours truly, P

ninastar · May 2011

Yes Pennylane, that was just the kind of scenario I was wondering about; how many have stopped the taxol or didn't take it at all that had no recurrence. I was just thinking 9 out of 12 ain't bad :-) But I guess we'll continue to risk it and test the boundaries of damage. Just don't want to see her continue to suffer beyond when she grows her hair back, beyond the breast reconstruction- to have a lingering, permanent side effect that effects everything she touches might just be too much to take. But it's all better than death at a certain point I know. That's why this is all so darn confusing, because any answer depends upon which spin or perspective you put on any given point. It all makes sense, and nothing is more right than any other option.

Huskerkkc · May 2011

I am on DD therapy (Cytoxan/Taxol) for six treatments, two weeks apart. I just had tx #5 on Friday. Taxol has been very difficult with neuropathy. They have reduced the amount the last two times, because of symptoms. Because I am on a clinical trial, I am limited to what I can take to help with the symptoms. However, I have been taking Neurontin (3x daily) and Glutamine (3x daily). This seems to help, some. Others have taken B6 I believe, but I was not allowed to take that. If the symptoms worsened any further, they would have considered stopping the Taxol. I too am afraid to stop it all together and with only one treatment left, feel like I can hang on. On day 3, my symptoms are so far better than the previous weeks. We'll see if that continues.

pamdo · May 2011

Hi Ninastar. Sorry your mom I having such a rough time. I had similar issues. I has 2 fec then had to remove the f and have ec only because was hospitalized with severe gastro issus. Then had 12 taxol. Neuropathy started on week 4...progressively worsened. No feeling in hands and after 8th treatment feet and calves were so bad couldnt stand for two days post chemotherapy. Had to take a chemotherapy break and then had dose reduction to 80%. Onc threatened to stop each week. I also did glutamine and b6. Things stabilized but didn't improve. Not sure if due to reduction or supplements or both. After chemotherapy gradually improved over 6 months. Still have mild in feet but hands all better. Been almost a year since chemotherapy and 7months since rads and so far still Ned.

Good luck!

yellowdoglady · May 2011

I'd take the risk myself as my intial prognosis was not so happy. But it's up to her. As many have said, living and doing physical therapy is somewhat better than dying. The years gained are not cancelled out by the time in therapy for most. But everyone is different and must make her own choice. I can't imagine choosing dying over living, but that is just me.

Quitting Taxol Advice?

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