neuropathies with Taxol
I have had neoadjuvent chemo for stage III ILC. I had a 4 cm mass in my right breast and 7 positive notes on initial PET scan. I tolerated the A-C okay but had trouble with excessive numbness in my fngers from Taxol. The loss of function in my fingers was really quite severe-- could not button or use a pen to write. My doctor had to decrease the dose of Taxol for the second and third rounds. Then I opted not to have the fourth round but to proceed with surgery and then consider more chemo if the neuropathies improved. My patholgy report from the masectomies showed a continuation of positive lymph nodes. I speak with a breast oncologist this week. Has any one had this experience. How likely is it the the neuropathy will improve if I try another couple of cycles of Taxol? Is there an alternative to taxol. Would love to hear from any stage III surviviors or women who are currently undergoing treatment for stage III.
Comments
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I didn't have Taxol, but Taxatore, but I know that is also known to produce neuropathy.
Just a question - did you use ice-mitts during your infusion? They use them routinely at the hospital I was treated at, and they have cut the neuropathy rate down to only 10%. I basically held my hands in an icebag during my infusion, and had no neuropathy at all. Worth a try.
Also some people do 12 weekly taxols, so the dose each infusion is smaller - that may be another way to get some more treatments in.
Good luck with it - Chemos the hard part!
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jejw I had severe neuropathy with taxol, now that I am two months out it is starting to subside. While taking the taxol I used L-glutamine powder mixed in my drinks 3-4 times a day, the difference it made was AMAZING!! My onc is actually the one that told me to use it. I would HIGHLY suggest it!! Good luck. Angi
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Thanks Angi: Can you tell me what the dosage was on the L-glutamine, I have been taking it twice daily (3,000 mg each dose). Perhaps I'm not taking enough?
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Thanks KM: I will try holding my fingers on ice bags with my next infusion. Yes, chemo is the hardesst part. Surgery was a breeze compared to chemo.
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jejw, When I had the first Taxol infusion, they infused it slowely over several hours. Maybe they could do it slowly with you for each infusion. I had the numbness in my fingers and toes also but it subsided after treatments ended.
Barb
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I am 8 months out since my last taxol treatment. I too had to stop due to a bad reaction to my third taxol. I have sever neuorpathy in my hands, legs and feet. When I came home from the hospital I also had it in my mouth but that did go away. My legs have improved but I am still numb on the inside of both legs from the knee down. My finger tips have also had some improvement but are stuck in that stinging-can't stand for pressure on them stage. My feet I just recently notice have some feeling coming back on the bottom of them.
I do take 150mg of Lyrica. I didn't think it was helping until I had to temporarily stop it. Even when I miss a dose I notice it and start having the sharp stinging pains up and down my legs and in my hands and arms. I am hoping that I will see more improvement and I was told it could take 2- 3 yearsto go away if I am lucky.
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I had extremely painful unbearable nueropathy in my legs during taxol, felt like someone was bashing my legs with bats and shocking me with electricity to the point I was actually jumping around. The only time during treatments that I took pain meds and had to leave work early. My oncologist reduced the next dose, but it was still as bad. I got a second opinion and this oncologist actually called mine up and read him the riot act for reducing my treatment, and then he switched me to taxotere (sp?). I did not have the same problem with taxotere, much better, although I still have nerve damage in my feet and struggle with my legs feeling jumpy at times, especially when its cold and then when it is too hot I have a lot of swelling in my feet too. Anyway I would ask if taxotere is an option for you. We all respond differently, but for me taxotere was a breeze compared to taxol. Also the new oncologist said that recent studies said it was better too. But more expensive or something so other had not got on the taxotere board for that reason, Do not know if any of that is true though. I would be concerned though since I was told that damage is usually permanent. Although I am not sure it was all because taxol and not also taxotere that caused all my nueropathy, I has gotten somewhat better 3 years out though. Good luck
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My onc had me taking 3 500mg of Vit B6 during all my original chemo. Once I no longer complained of the tingling he had me stop. Did the same thing when I started & stopped my caroplatin. Apparently he believes that the extra B6 can help the nerves resist the damage and helps repair.
I did get to the point of having to take pain meds for a week because my hands hurt so much. Thats when I found out why baby wipes were on the chemo prep list! He deferred my chemo that week and it was amazing how quickly the pain went away and I was back to just tingling. Who knows if the B6 helped but I figured it didn't hurt.
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According to wikipedia:
"The classic clinical syndrome for B6 deficiency is a seborrhoeic dermatitis-like eruption, atrophic glossitis with ulceration, angular cheilitis, conjunctivitis, intertrigo, and neurologic symptoms of somnolence, confusion, and neuropathy"
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I had six taxol treatments and stopped them because of neuropathy in fingers and feet. Then had two taxotere. The last treatment was April 20, 2010 and I still have problems with my feet. My oncology nurse said the window of recovery is anywhere from 6-16 months after therapy, if it happens at all. I am still hopefull; however, the feet really bother me.
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I had the Taxotere and developed neuropathy in my hands and feet. No one told me about the B6 or the L-glutamine so I didn't take anything. However, my fingers and toes were in ice during tx. Regardless, my hands cleared up as well as my left foot. Looks like I have some (minimal) permanent neuropthay in my right foot. It's been over a year now. Would anything help at this stage?
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I'm 5+ years out from treatment.
My general doctor has a lot of horse sense...and I am a bad patient...I only go when I can't take it anymore.
De feet. YUP.
Recently switched me to Indocin...which is normally used for gouty arthritis.
It's not "perfect"....but, there is some improvement in the feet.
tl
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That being said, jejw...there are many other chemotherapy possibilities as well as hormonals (depending on the cancer pathology) and radiation.
I think that the doctor may be able to come up with a good plan for you...many times, they can consult with cancer boards, etc.
tl
Diagnosed Stage 3C in January 2005...not dead yet...living cancer free in Podunk, MS
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I didn't have Taxol either, I had neuropathy with AC so my dr. felt Taxotere every 3 weeks would be best for me. But it has caused other issues that I didn't have with AC and I too have had some numbness in my fingertips even with Taxotere. It seems to get better right before my next tx. which is tomorrow...let the horrible weekend begin
Take care & stay strong.
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I developed neuropathy right after my first Taxol (was supposed to have 4). All my fingers and toes were horrible. My onc switched me to taxotere with the assurance it is easier on neuropathy than Taxol. I didn't believe her, but it never worsened at all for the remaining three taxotere doses. It lessened considerably after all chemo was completed, but took about 6 or 7 months before I could really notice it was going. Still have a bit in my toes, but nothing like it was with that first taxol. That was a nightmare! Wishing you the best,
Linda
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I had Neuropathies from the get go with Taxol and debated having the fourth treatment. This week I had a consult with a breast oncologist about receiving the final treatment of Taxol because my neuropathies in my fingers is/was quite debilitating. She had an interesting perspective--- she said she would not recommend having more Taxo,l and taxotere as well as Abraxane would probably also couse neuropathy. She said that she could not assure that one more round of Taxol would improve my chances of survival, but she could assure almost 100% that one more round of Taxol would cause more neuropathy. She said She said about 15 percent of woman can not use Taxol due to neuropathies. She had instead advised that I proceed with radiation and Tamoxifen. She said hormone therapy is probably more important than chemo with hormone positive breast cancer. So I have made the decision not to receive the last dose.
Thanks for all the support from others who commented on this topic.
jejw
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I'm on taxotere and had a little on my left hand after the first round but got better. Might be starting up again now that I had my 2nd round this past Tuesday. My oncologist said if it worsened she might lower my dose. I have 4 more rounds to go of TCH.
I'm going to ask my onc about vitamin B6 next time.
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Hi jejw, I too was on taxol for 4 teatments before only going with Herceptin.i have neuropathy very bad in my feet, it feels like I am constantly walking on hot course sand. I did have this problem for a few years and my pain management doctor finally got it under control with nerve blockers and medication, before my BC, now I can't have any shots in my back for the neuropathy, and it is back with avengence. Going today for my Herceptin treatment, and going to ask my onc if she can help.
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After 12 weekly Taxol treatments in 2006 I had numb feet (felt like they were wooden, couldn't balance) and fingers (couldn't hold a pen well enough to write, kept dropping plates and cups) but some of that went away in the first year -- I can write legibly and I can walk on my wooden feet. My fingernails and toenails are back to normal. Haven't dropped things in months.
So some of this may take time. And some of it may continue but you can learn to compensate or just to live with it,
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I participated in a study for Acetyl L-Carnitine with I think the same dosage for six months. Was I ever glad when it was over! However, I also have to say that any neuropathy symptoms were minimal, and the nail damage was from the end of AC, not taxol. They are growing back just fine, so most likely will end up being a cosmetic benefit!
About 40% of patients get minimal symptoms when on Taxol, so no idea if it helped, or even whether I even got the med. I could have been in the control group.
I did drop a bowl when on Taxol, but because my skin was slick and waxy so just slid out of my fingers. The bottoms of my feet still feel "starched" but do have feeling as I discovered when I stepped on a thistle last summer.
We should know within the next year or so whether Acetyl L-Carnitine has any proven benefit.
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I did 12 weekly Taxol and developed neuropathy. For me it was discomfort and tingling on the bottoms of my feet with some numbness around the toes. My fingers also lost some sensation, but not all. I dropped more lightweight things like utensils, paper, pen or occassionally I had to use two hands to hold a drink cup. A lot of the symptoms have gone away except the bottoms of my feet. They are still very tender and hurt when I walk more than 3 miles or stand too long. I guess it takes time.
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I had terrible neuropathy with Taxol, so severe that I couldn't button a shirt, fingers were so painful I couldn't do anything & my toes were so bad, I had to crawl up the stairs. They cut my next 3 treatments to 75% & gave me gabapentin, which helped somewhat. I had acupucture to help with something else & discovered that it took care of the lingering neuropathy.
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Dear KerryMac,
Could you please tell me the name of the hospital where the ice-mitts were used during your Taxotere infusion? I would like to get the same thing instituted at my hospital.
George
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My last Taxol was January 19, 2009 and I still have neuropathy in my feet and my toenails still aren't right. I have a left foot drop as well. My PCP says that at this point it will be permanent.
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