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Neuropathy

tinacap77
Posts: 28
Joined: Oct 2020

For those who have finished chemo, did your neuropathy in your feet go away or has it been permanent? While you were going through chemo is there anything that gave you relief? I tried ice therapy and it gave me some relief early on, it does not help with the neuropathy at night in my feet which affects my sleep.

EZLiving66's picture
EZLiving66
Posts: 1452
Joined: Oct 2015

Some women have reported theirs went away. Unfortunately, mine did not and it's been five years so I don't think it will. I did find something that has helped me - Vitamin B12 liquid. A nurse friend bought me a bottle of it to try and it does help. At least my feet don't feel like they're on fire at night and it has brought the pain down from a 7 or 8 to a 4 or 5 which I can live with.

It's worth a try and my doctor ok'd it. 

Love,

Eldri

Molly110
Posts: 182
Joined: Oct 2019

Hi Tina,

I finished chemo a year ago this month. The neuropathy in my hands is gone, but I still have significant neuropathy in my feet. There are many things that you can try to see if they help. Your care team should know a lot about those and should be able to walk you through things for which there is some evidence base and things you might want to try even without the evidence of effectiveness.

Acupunture has been a lifesaver for me. There is definitely evidence supporting acupuncture for chemotherapy induced peripheral neuropathy, but it does not work for everyone and is expensive. If there is anyway you can try it, I would highly recommend that you do. Someone posted recently that her cancer center provides acupuncture as part of their services at a reasonable/reduced price or perhaps free, I can't remember which. Another thing I know helps me is alpha lipoic acid. I use a brand called Bluebonnet, which I get through Amazon. It's hard to know what therapies and supplements work, because we often start multiple things at the same time and don't have a way to know what's responsible for improvements. I started the alpha lipoic acid during chemo on the advice of my nurse practitioner and have continued with it. I let myself run out a couple of months ago, and within a couple of days I had a big upswing the the neuropathy. It took me a couple more days to track down what was different, and when I realized the only difference was that I wasn't taking the alpha lipoic acid, I got some overnight and things were back to normal in a couple of days. I've forgotten who it is, but someone posted this year that starting alpha lipoic acid even years after her chemo made a big difference with her neuropathy.

I take B 12 in pill form and other B vitamins, for which there is evidence of effectiveness. I recently got a prescription to try MetaNX, which is an "activated" form of one of the B vitamins. I think there may be some evidence of its effectiveness in diabetic neuropathy, which is not the same as the chemo kind, but a friend's doctor suggested I try it, and my own gyn/onc is very open to me trying anything that isn't harmful. Anytime I have any questions, he or my NP look at the evidence for/with me, so that helps me figure out what I want to try. 

Many people get relief from an antidepressant/antianxiety drug called Cymbalta. Its use for neuropathy pain has nothing to do with either anxiety or depression, though, so you needn't have either of those conditions to try it. There is a lot of data supporting its use for neuropathy pain caused by taxane and platinum chemo drugs. I tried it, and it had no effect at all on my neuropathy and had unpleasant side effects on my sleep. You could well be one of the people for whom it works, so don't be discouraged by my experience.  

One of the articles I read while I was in chemo said that because there is no silver bullet for neuropathy, the best approach currently may be a combination of supplements, medicine for the pain (if needed), and something topical. I tried many topicals/salves. The only thing that offered any comfort for my feet is a CBD salve sold by Young Living called Nature's Ultra Muscle Rub. It's very expensive and does offer some comfort, but certainly doesn't solve the problem. When my neuropathy is bad, my feet alternate between burning and freezing within seconds, and sometimes it feels like they are burning and freezing at the same time. Applying the salve in the morning and night during those periods provides some comfort. Lots of people swear by CBD oil under the tongue, but despite using a hgh quality, pure oil, CBD did absolutely nothing for me.  I live in a medical marijauna state, so I've also tried THC patches, and they also had no effect on the pain.  I've heard, though, that many people find the patches really helpful with the pain.

I'm fortunate that regular acupuncture reduced the neuropathy in my feet from severe to managable early on after chemo, and it continues to make a really big difference. I've written at boring length in other posts about acupuncture, and I think it's possible to search for those posts if you're considering it.

I hope you find the right combination of things that are right for you. You will likely get many helpful responses from other women on the board.

Molly

cmb's picture
cmb
Posts: 594
Joined: Jan 2018

My oncology nurse told me that it can take up to a year for chemo-induced neuropathy to disappear. But if it isn't gone by then, it's most likely permanent. I have neuropathy in my toes and balls of my feet. But since it didn’t appear until after my last treatment, it's very mild and I haven't needed to do anything for it.

My PCP has just started me on B12 for other reasons. I'll be interested to see if it makes a difference in my feet.

zsazsa1
Posts: 539
Joined: Oct 2018

I finished carbo/taxol chemo about two years ago.  I iced assiduously during infusions, but declined the last round of Taxol because I'd had a few "ice pick" stabbing sensations in my big toe, and I thought, if this gets worse or is permanent, I'll never sleep again.  I wound up with numbness on the ball of my left foot because inevitably I'd fall asleep during the infusion, and the ball of my foot would wind up resting on the bottom of the plastic shoebox filled with ice water, and would get warmer as the foot stayed in contact with the bottom of the box, which was of course resting on the warm carpet.

Anyway, the numbness in the ball of the left foot has never gone away, but the only time I notice it is when I'm washing it, and realize how numb it is compared to the other foot.  I never have those horrible stabbing sensations, but they were very brief, anyway.  I found that stretching out my legs at night (which extended the nerves) triggered the stabbing sensation, so you might want to try sleeping on your side in the fetal position, if you're having stabbing pains in your toes.

Quilter_1's picture
Quilter_1
Posts: 95
Joined: Mar 2019

Almost 2 years after my last chemo, carbo and taxol, I still have neuropathy in my feet.  It has gotten better, but will most likely not go away.  I tried acupuncture for several months and it seemed to help.  Oddly, the thing that helps the most are the house shoes I wear.  I bought a pair of Minnetonka moccasins, the soft sole ones with the natural sheep skin lining.  They make my feet feel almost normal and have become my every day shoes while in the house.  I think it's the texture of the sheep skin that tricks my brain.  But, whatever the reason, they work for me.  I bought them online from Minnetonka's website.  They may work for you, it's worth a try.

Molly110
Posts: 182
Joined: Oct 2019

I have shearling slippers also and stopped wearing them after I got neuropathy in my feet because the shearling felt rough an hurt, rather than soft and comforting as it had before the neuropathy. Part of my physical therapy was to re-introduce things that hurt, like the shearling, so that my feet could get used to different textures and sensations. It worked, and I'm back to wearing my shearling slippers constantly during the winter. They seem to help even when my feet feel frozen from the neuropathy. Is there anything else that you have found helpful? I am always looking for things to try.

Thanks for sharing that,

Molly

jan9wils's picture
jan9wils
Posts: 146
Joined: Mar 2017

I had mild neuropathy after chemo and began B12 supplements and alpha lipoic acid. They worked pretty well for three years. Then suddenly it got worse!  I was referred to a neurologist. I tried different prescriptions and had no change. Some days I couldn't tie shoes or button clothes. I was afraid to use a knife. I was awaked by stabbing and burning pains.  The neurologist wanted to layer on more prescription medication. I tried it for six more weeks.  Then I asked to be titrated off.  I went to an acupuncturist and what a relief. It is expensive, wasn't covered by my insurance but it was worth it.  I stopped when I had no more money but three months later I'm still doing pretty well.  I still have it but it is very mild, almost totally gone in my feet. In my hands it is in the tips of my fingers and thumbs only now. Mostly numbness, rarely burning or stabbing pains. I hope you find relief soon.

Jan

annie1029
Posts: 1
Joined: Jan 2021

I am six years past my treatments and mine never went away.I learned to deal with the pain 24/7. I am on pain med. A year ago I had to quit working and filed for disablity.I no longer work.But its different for everyone.

 

Mercorby
Posts: 32
Joined: Jan 2017

Hi,

It's been almost 5 years since chemo.  I still have some neuropathy in my feet and a tiny bit in my hands.  Acupuncture and acupressure pads for the feet and the acupressure ball for my hands help a lot.  The severity comes and goes.  The neurapathy in my scalp is tough.  I take a Tylenol before I go to bed for that. 

My continued, but mile neurapathy is probably due to the Ibrance and aromatase inhibitor that I take for maintenance.  90% of the time, I am not bothered.

Hope this helps.

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