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Living with extreme neuropathy

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thought I was gonna get thru chemo unscathed but neuropathy hit like a brick. I constantly drop things and my feet hurt constantly some times more than others. Gabapenten(sp) helps some. So frustrated. I mentioned to my onc it was starting but no suggestions to change anything during chemo. Now I find out it starts out mild and worsens over time. Quality of life has to be an issue but other than that I did great. I know she was doing her best. Just frustrated because after I'm done with rad (22 left) I go on tamoxifen and that freaks me out even more. Hot flashes are bad enough but add that geez....just having a one of very few blue days

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Comments

  • dtad
    dtad Member Posts: 771
    edited November 2016
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    Hi there. So sorry you are suffering with neuropathy. I have an autoimmune sensory peripheral neuropathy. I believe it can be the worst pain experienced, except of course child birth! Have you tried Cymbalta? Its an anti depressant that works for neuropathy. it helped me more than the classic neuropathy meds. Good luck...

  • moderators
    moderators Posts: 7,915
    edited November 2016
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    Hi Jbakerwebb,

    We, too, are sorry to hear you're dealing with this awful side effect of treatment. We're sure you'll get some more helpful answers soon from others managing neuropathy.

    In the meantime, you may want to check out the main Breastcancer.org site's page on Neuropathy for some tips to help manage this side effect.

    We hope this helps, and that you feel better soon!

    --The Mods

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
    edited November 2016
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    I hope it goes away for you like it did for me. My peripheral neuropathy was in my feet and started during Taxol. B12 (1000 mcg) and Reactine helped me. My peripheral neuropathy stopped about 5 weeks PFC.

    Others have taken B6 (100 mg max) and L-Glutamine. You can check the Weekly Taxol thread for recommended dosages on L-Glutamine.

    I still take B12 and will continue as long as I feel this fatigue. I finished rads 3 weeks ago.

    Hope you feel better soon.

  • Millie11
    Millie11 Member Posts: 4
    edited November 2016
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    My daughter is experiencing severe burning and itching in her feet and hands after her 2ndTaxol treatment. Her 3rd one got delayed a wk due to her wbc. She has 2 more to go.

    I'm wondering if it's going to spread to other body parts after her 3rd treatment. Does it always go away when treatment is finished? Can it ever be permanent? Her nurse doesn't say much.

    Worried Mother


  • Jbakerwebb
    Jbakerwebb Member Posts: 12
    edited November 2016
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    unfortunately I wasn't even aware this was a potential side effect. Mine started ever so slightly after 2nd Taxol and my onc wasn't too concerned. Then boom 3 days after last Taxol (#4) it came on with a vengeance! I must say mine has subsided substantially but still a problem for me. I'm just thankful for even the smallest amount of relief everyone is different. It can be permanent. I've found all this out after the fact. I pray your daughter can find some relief. I'm taking tons of b vitamins (b12 and b complex)and alpha lipoic acid which has helped tremendously and gabapentin drug.

  • bradie234
    bradie234 Member Posts: 7
    edited November 2016
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    I am currently on tamixfin been it for a year and my biggest problem is superficial blood clots


  • Cdwind
    Cdwind Member Posts: 3
    edited December 2016
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    I am experiencing severe pain in my hands and feet. I do have neuropathy in my feet. The pain is different. I finished chemo 2/16 and radiation 5/16. The pain can be quite debilitating. I have seen my oncologist, she now has referred me to neurologist. Also a pain doctor. I am so tired of this pain. Anyone else have these problems so long after treatment

  • Jbakerwebb
    Jbakerwebb Member Posts: 12
    edited December 2016
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    my neuropathy is worse in the mornings. I have found an athletic shoe made by under armour that helps. It has a round toe so my toes aren't "bound" up.


    I'm so sorry you're having such a difficult time. I find myself on emohighs and lows and I'm thankful for the lows because.....they make me appreciate the highs SO much. Also the b12, b complex and alpha lipoic acid has been a life saver. Those are avail anywhere....Walgreens, wal Mart etc.....they promote nerve health. Give them a try. I know I take a handful of supplements morning and night and they help tremendously!!


    Blessings to you and yours at CHRISTMAS

  • jcpriest0469n
    jcpriest0469n Member Posts: 63
    edited December 2016
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    so sorry Cdwind,it's been 3 yr now and my feet have calm down. I take a muscle relaxer and coconut juice add to my smoothie in the morning. My hand are acting up lately out of the,blue. Maybe it's the cold weather, but it's mostly frustrating. Good luck on your search.

  • snowsogal
    snowsogal Member Posts: 15
    edited December 2016
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    Hi Millie: My neuropathy started after my 4th chemo treatment with Taxotere. My oncologist scaled down the dose for the remaining 4 treatments. Unfortunately, mine is still with me after my treatments in 2015. I have polyneuroathy that is sensory and peripheral for over two years now.

    Yes, sometimes it can be permanent. I would talk to her oncologist, and see if they could scale down the dose. They gave me neurontin and Cymbalta. It did not help. They gave me Lyrica and other opiate drugs that did not help either. Therefore, I take a Neuropathy Supplement to help start regenerate my nerves.

    In my situation, I had Shingles at 53 years of age, and had nerve pain for two years, but it did go away, but an infection like this can trigger neuropathy, as well as the cancer drugs.

    I do hope your daughter can recover from her neuropathy. It can be very debilitating.





  • snowsogal
    snowsogal Member Posts: 15
    edited December 2016
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    Hi Millie: My neuropathy started after my 4th chemo treatment with Taxotere. My oncologist scaled down the dose for the remaining 4 treatments. Unfortunately, mine is still with me after my treatments in 2015. I have polyneuroathy that is sensory and peripheral for over two years now.

    Yes, sometimes it can be permanent. I would talk to her oncologist, and see if they could scale down the dose. They gave me neurontin and Cymbalta. It did not help. They gave me Lyrica and other opiate drugs that did not help either. Therefore, I take a Neuropathy Supplement to help start regenerate my nerves.

    In my situation, I had Shingles at 53 years of age, and had nerve pain for two years, but it did go away, but an infection like this can trigger neuropathy, as well as the cancer drugs.

    I do hope your daughter can recover from her neuropathy. It can be very debilitating.





  • snowsogal
    snowsogal Member Posts: 15
    edited December 2016
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    Hi C wind: Yes, mine started in 2014 after 4th Chemo, and I take Nerventrax Neropathy supplement that has B vitamins and R-alpha lipoic acid as well as other herbs in it. I have pain in my big toes, and numbness and severe itching ( which is sensory neuropathy). Yes, I went through the neurologist and pain doctor to know avail. I decided I was not going to get pain blocks and opiates the rest of my life. I think I would rather have the pain instead of the constant itching and burning when I get my hot flashes.

    My neuropathy is throughout my whole body. Not just my hands and feet.

    I am sad that you have this awful SE too

  • snowsogal
    snowsogal Member Posts: 15
    edited December 2016
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    Dear C wind:

    Yes, I take Nerventrax a neuropathy supplement. I have more numbness, itching, and pain on my big toes. My treatments were two years ago.

    I went the dr route, but nothing helped.

    The supplement to regenerate the nerves.

    I don't know if this is going to be permanent or not

  • gardengypsy
    gardengypsy Member Posts: 499
    edited January 2017
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    My Taxol treatment ended in April 2016. The neuropathy pain is mostly in my shins, pain from the knees down. I wouldn't make it through the day without Gabapentin. At night, Ibuprofen helps a lot.


    I am still shocked that I am in this condition.

  • snowsogal
    snowsogal Member Posts: 15
    edited January 2017
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    Hi Gardengypsy:

    Yes I am shocked too, I was hoping that after chemo left my system that neuropathy would have left also, seeing that they decreased the Taxotere for the last four doses. They did this because Lyrica and Neurontin did not help at all.

    Unfortunately, I understand now that we pay a high price to be in remission.

    In fact my left side of my face is still swollen a little from the chemo, as well as my collar bone when they removed the port. It is amazing the changes that occurr in our bodies after this cancer journey.

    I am glad that Neurontin and Iprofren works to take the edge off the pain.


    Take Care

  • gardengypsy
    gardengypsy Member Posts: 499
    edited January 2017
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    snowsogal~

    If I was not working so hard (as a teacher), and got more rest, I'd be in better shape. The exhaustion from pain and lack of sleep is doing me in.

    I have my first neuropsych eval next week. It keeps getting rescheduled. I hope it's worth the trip! From these posts, it seems like it's a waste of time...

    Are the nerve regeneration meds working? Why didn't the docs start with it?

    I am not sure if Ibuprofen is a good thing to take daily.I would take more Gabapentin, but I think it may be contributing to my brain fog...

  • minustwo
    minustwo Member Posts: 13,078
    edited January 2017
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    Garden Gypsy - the neurologist I went to said they could do all kinds of tests, but it was clear that I had CIPN, so I opted to skip the tests. My feet were numb like blocks of ice but I didn't have much pain. She said it might gradually get better over 2-3 years. She also cautioned that "better" means better that it is when the problem starts - not back to where you were before chemo. A number of us have had some improvement, but those that I know are mainly dealing with lack of feeling and not constant pain.

  • Jbakerwebb
    Jbakerwebb Member Posts: 12
    edited January 2017
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    I'm going to my GP Thursday to discuss my general health and make changes to my meds. I'm going to ask him about changing to cymbalta

  • snowsogal
    snowsogal Member Posts: 15
    edited January 2017
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    Gypsy,

    The natural supplement is something I had to research myself; because I can not handle SE of most Rx meds. I will say that the itching is more manageable, which is a small fiber sensory neuropathy that I have acquired. I do not have so much of the burning and shock like pain that I had.

    Your dr will not tell you about this, unless he is a Naturo Path Dr; I just learned Conventional Drs have been taught symptom control with diseases not a cure.

    I went to a neurologist and had the Nerve Conduction Study, and it did not confirm that I had neuropathy, but with their evaluation tests that they did that was the only way it was comfirmed. She tried Cymbalta, but did not work. Gave me a pain dr referral that all care was not covered.

    So, I asked a friend who she went to. I called that dr up, they did their testing and said I had chemo induced polyneuropathy. This means more than just one set of nerves involved.

    Tried Lyrica again and it gave me a reaction. Then they gave me Nucyanta ER, pain med. When they tried to imcrease it it just drugged me up. Besides that I had to drive to 8 different pharmacies to find that particular low dose of that drug. I felt too much stress going there so I canceled my last appt and never returned. The only supplement the pain dr gave me was Metanax, but the Ins stopped covering it, because it was not a rx drug. I felt some energy from it, but it was for only two months

    I only went about four months, and quickly saw that these people were not ever going to get better. I only saw the actually dr once and then the CNP handles it from there. All they wanted to do is give me narcotics, and I was not wanting to live like that.

    They give you a drug screen every other time. They may call you anytime and request you bring in the pills and count them. This is a random call, and usually a extra visit. You do not get refills called in. If you have problems with the meds, it requires another office visit, to get it taken care of.

    I just did not like the whole system. I was treated like a number and not with dignity.

    This was my experience, maybe yours will be positive. My mom told me something, before God took her 2014, they give you one medicine for a condition, and they have to give you another for the side effects of the first med. She was absolutely right. That has been my experience, and I am not going that route.

    I can relate to pure exhaustion and insomina or sleep issues. That is all I have ever known since my 20's. They can't figure that out either. Did sleep study and did not detect the reason why?

    I take Vervain for sleep.

    Having chemo has messed me up in so many ways. I just hate it.

    Take Care


  • snowsogal
    snowsogal Member Posts: 15
    edited January 2017
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    Hi Minus,

    This is so sad what these chemo drugs have done to some of us. Is your right foot numb like a block of ice too? If it is how do you drive a vehicle? I have a little amount of neuropathy on the right side, but more on my left. Thank God I am able to drive.

    I have some pain in my feet, but mostly numbness, lack of feeling, and the clincher 24/7 nerve itching all over my whole body. In fact, it was so bad during chemo, that the last few treatments friends would have to sit with me at my house to help me deal with it. It helped take my mind off of it when people were here.

    These cancer treatments have really "rocked my world". In fact, I went through an organization called Allsup, and was approved within month or two for disability. This was not a lawyer I went through. I filed in 2015 online through SSI but heard nothing. Then my chemo fog kicked in and remembered a good friend went through Allsup. So, I took the plunge and called Allsup. They were my mediator with SSI. They only accept cases that they feel, have a good chance of getting disability payments.

    Do I want to be on disability? Absolutely not, but now I don't have to worry about how I am going to literally function at a job with chemo fog, exhaustion, lack of feeling from neuropathy.....

    I am not happy Minus that we are here, but what a comfort to know I am not alone

  • snowsogal
    snowsogal Member Posts: 15
    edited January 2017
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    Jbakerwebb: Please be sure the supplements do not interact to with the Cymbalta. I take supplements too.

    Use to be drs would be concerned about supplement and rx med interactions. I find here they don't even seem to care.

    Oh, how the medical system has changed. I have seen it go downhill here with the primary care DRS.

    I am looking at essential oils now to help with neuropathy. In fact, I have ordered an essential oil balm. I should receive it today.

    Have you had any strange skin eruptions that just start to itch and they go away? I have had problems with this since my treatments? Like right now, I am just sitting here, and my right hand started to itch. I look down at my hand and see; I have a small bump that is really itchy, this happens a lot and absolutely maddening.

    Is there a post forum already created for this? Does anyone know

  • snowsogal
    snowsogal Member Posts: 15
    edited January 2017
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    Jackerwebb: I am not through menopause. My hot flashes are so bad that I could not handle the Tamoxifen or any of the Arimedix, Letrozole, Aromasin. The extra hotflashes, and other SE were overbearing from all these meds.

    I hope Tamoxifen works for you. I started bleeding a little, and I did not want to put up with that SE on Tamoxifen. Hope your experience is more positive


  • snowsogal
    snowsogal Member Posts: 15
    edited January 2017
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    Serenity: I am so glad your neuropathy reversed itself. Mine started during Taxotere, the oncologist decreased the dose the last four doses, but mine has not reversed. I guess I was too far long with the treatment to stop, and try another chemo. This was back in 2014.

    I do take a specific neuropathy vitamin with B vitamins and R-Alpha Lipoic Supplement. I have seen the nerve itching decrease, but not the numbness or lack of feeling.

    We pay a high price to be in remission or cancer free with are " new norm". Sometimes it just angers me

  • Jbakerwebb
    Jbakerwebb Member Posts: 12
    edited January 2017
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    how much of the alpha lipoic acid do you take

  • gardengypsy
    gardengypsy Member Posts: 499
    edited January 2017
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    Snowsogal~ Thanks so much for taking the time to share your experiences. I think that a short-term disability claim is in my near future. I need the time to focus on my sleep, exercise and supplement regime without the complications of work-related fatigue and stress. Never heard of Allsup.

    Today, finally, is my neuro eval. Along with many other questions, I will ask about the B vitamins.

    It seems like many of these pharma and natural products will work for some, yet others do not get similar relief. All the more reason to keep sharing ideas

    Jackie~ It seems like a trip to a naturopath or integrative health center isa pretty important step for us to take. I worry about the expense.

    Has anyone out there tried yoga therapy?

    Have a good day, ladies..

    .


  • gardengypsy
    gardengypsy Member Posts: 499
    edited January 2017
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    Bosum~ Yes. I have a feeling I will feel well in other ways, too.

  • snowsogal
    snowsogal Member Posts: 15
    edited January 2017
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    Hi Jackerweb: About 300 mg a day. Please note it needs to be R-Alpha Lipoic Acid. I buy my supplements at

    www.lifeextension.com

    In fact, if you have a membership. You can have a 30 min consultation over the phone with their oncologists or any specialist for free. It has been very beneficial for my husband and I. If dr is busy you leave a msg and the best time to call, and they will call you back.


    Hope this helps

  • gardengypsy
    gardengypsy Member Posts: 499
    edited February 2017
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    snowsogal~

    Did Allsup help with SSI? Or with a claim through your employer's disability insurance?

    Also, did the R-Alph Lipoic supplement help with neuropathic pain?

  • Katjadvm
    Katjadvm Member Posts: 117
    edited August 2017
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    Hi everyone. I am a year out from chemo. I developed a peripheral neuropathy and they decreased my final two chemo doses. I work with a naturopathic oncologist and she has me take 15 grams of glutamine twice daily and 300 mg of R Lipoid Acid twice daily. I had initially weaned off of the glutamine about a month after chemo, but then the tingling in my hands returned and I restarted. If I take the glutamine, I don't have any neuropathy signs. Just wanted everyone to know.

  • gardengypsy
    gardengypsy Member Posts: 499
    edited August 2017
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    Kat~ Do you take these supplements for pain, numbness or both?

    I am going to a neurologist next week who specializes in neuropathy. It has taken me 6 months to get a freakin' appointment, while the onc just keeps on upping my Gabapentin dose.

    If I learn anything new, I will post it here.

    Best wishes to all.