Chemo-induced Peripheral Neuropathy and Breast Cancer

Posted by karendb @karendb, Feb 10, 2019

Hi. Karen here again. Since my last chemo treatment on dec 19th I've had terrible neuropathy in both hands and feet. Has anyone else had this and do you know how long it lasts?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Sorry about your neuropathy. Mine is chemo-induced neuropathy, it started before I was done with chemo and nurse n doctor kept telling me it would go away once I was done with treatment. Unfortunately, when they started me on the infusions to keep cancer away neuropathy only got worse. I had 2 treatments and then asked to lower dose which we did twice. After the second time I said I don’t want anymore, my symptoms kept getting worse, so we stopped. I no longer take anything. After surgery and radiation were done symptoms were no different. Finally started gabapentin, tried 300 mg bid but could not tolerate it so lowered to once a day which I can tolerate. I stopped for awhile due to illness they could not tell me what it was, I think I got Covid and not diagnosed so I suffered from after effects from that. I started back on gabapentin because neuropathy was getting worse, so am hoping it helps in the long run. Doctors telling me it would go away after treatment was done were wrong. Good luck to you.

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For any of you who are Mayo Clinic patients, you may be interested in this research study that @mugs24cancer made me aware of.

– Topical Cannabidiol for the Treatment of Chemotherapy-Induced Peripheral Neuropathy https://clinicaltrials.gov/ct2/show/NCT05388058

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@karendb

Hi again. I would also like to know if anyone else, after chemo for bc, had neausea 3 months after. I'm still suffering with it but mainly after I eat. I'm also still having radiation treatments. 8 to go.

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Weird,but someone told me that chemo is now used for a treatment for extreme and painful neuropathy. Could this be true?

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@kk57

@colleenyoung - I have had three of the four cycles. Yes, they have presented options (reduce Taxotere, replace Taxotere with adriamycin, Cytoxin only). Deciding what to do this week when my oncologist gets back from vacation. The CIPN is pretty bad in my feet and legs… and worsening.

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It is such a hard decision, KK57. Keep in mind that the dosage of Taxotere is based on numbers - averages of all patients. But for you, the optimal dosage may be too toxic. You mustn't think that by reducing or eliminating Taxotere for the final round means that you're not getting the optimal dosage. It just means they are making an adjustment that's right for you - enough chemo to kill the cancer cells and not too much that the toxicity leads to lower quality of life. I encourage you to have an honest and open conversation with your oncologist and express your fears and concerns.

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@colleenyoung

Hi kk57, I moved your question to this existing discussion in the Breast Cancer group called
"Chemo-induced Peripheral Neuropathy and Breast Cancer." I did this so that you can connect with other members like @elizm @karendb @cancersucks @marshabel @mugs24cancer and @cindylb, to name a few, who have had neuropathy related to breast cancer treatments. You may wish to scroll through the past messages to learn more. Also see the webinar that @staciej posted from the Foundation for Peripheral Neuropathy.

KK, is your team considering reducing the amount of chemo for the last treatment? Other options? How many cycles have you had?

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@colleenyoung - I have had three of the four cycles. Yes, they have presented options (reduce Taxotere, replace Taxotere with adriamycin, Cytoxin only). Deciding what to do this week when my oncologist gets back from vacation. The CIPN is pretty bad in my feet and legs… and worsening.

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Thanks @cathyhand. Appreciate your reply.

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@kk57

I am receiving TC Chemo (taxotere & cytoxin). After third treatment, I am experiencing peripheral neuropathy. Tingling, numbness, pain in fingers and bottom of feet. Pain and weakness in legs. It is progressing/worsening. I have one treatment left. Has anyone else experienced this? If so, what did you do?

Research says it cannot be consistently prevented or cured. It may go away on its own after treatment weeks, months, years, or never. It may continue to worsen after treatment completed.

Am working with my Mayo care team, however, interested in others’ experiences. Thanks and god bless.

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I had TAC 7 years ago. I started Exemestane immediately after. The pads on my feet hurt very bad, especially when getting out of bed during the night. Hurt to walk at times, like needles. It did go away but took at least 4 years. No problem now. I do get cramps in my feet but has also gotten much better with time and I still have some neuropathy if I use my fingers for typing or on phone occasdionally for very long, just numbness. Still here though with no recurrence to date. Bi-lateral breast cancer, stage 1, no nodes positive and stage 2b, 2 N positive.Thankful for treatments.

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@kk57

I am receiving TC Chemo (taxotere & cytoxin). After third treatment, I am experiencing peripheral neuropathy. Tingling, numbness, pain in fingers and bottom of feet. Pain and weakness in legs. It is progressing/worsening. I have one treatment left. Has anyone else experienced this? If so, what did you do?

Research says it cannot be consistently prevented or cured. It may go away on its own after treatment weeks, months, years, or never. It may continue to worsen after treatment completed.

Am working with my Mayo care team, however, interested in others’ experiences. Thanks and god bless.

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Hi kk57, I moved your question to this existing discussion in the Breast Cancer group called
"Chemo-induced Peripheral Neuropathy and Breast Cancer." I did this so that you can connect with other members like @elizm @karendb @cancersucks @marshabel @mugs24cancer and @cindylb, to name a few, who have had neuropathy related to breast cancer treatments. You may wish to scroll through the past messages to learn more. Also see the webinar that @staciej posted from the Foundation for Peripheral Neuropathy.

KK, is your team considering reducing the amount of chemo for the last treatment? Other options? How many cycles have you had?

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I am receiving TC Chemo (taxotere & cytoxin). After third treatment, I am experiencing peripheral neuropathy. Tingling, numbness, pain in fingers and bottom of feet. Pain and weakness in legs. It is progressing/worsening. I have one treatment left. Has anyone else experienced this? If so, what did you do?

Research says it cannot be consistently prevented or cured. It may go away on its own after treatment weeks, months, years, or never. It may continue to worsen after treatment completed.

Am working with my Mayo care team, however, interested in others’ experiences. Thanks and god bless.

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@staciej

I "attended" this webinar and it was super informative!! I asked for my compounding cream to be switched from what it was to what Dr. Tim Smith recommends, along with switching out Lyrica for Cymbalta. I'm giving that a try anyway. This was a great webinar to share with the group!

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Thanks for the feedback @staciej! In case anyone didn't get a chance to see the webinar...

Webinar: Chemo-Induced Peripheral Neuropathy

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