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Any tips on dealing with neuropathy?

Ever since my chemo treatments (ended September 2016) I've had neuropathy in my feet up to my ankles, and have flare ups which can really painful.

My GP says he can prescribe lyrica but I took it when I had shingles 5 years ago, and stopped it after 3 pills because I liked it too much, if you get my drift.

Anyone have tips on how they handle theirs?

Thanks.

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Hi, I finished my treatment 2 years ago & I had the same problem,but it is now only in my toes.I did not take any medication,but found it better if I kept slippers or shoes on my feet. I remember saying to the Oncologist I think ishould go to bed in shoes!!.I do still get a burning sensation & if it is really bad I wear socks in bed (very sexy) .

I am soory that I cannot help with medication,& I hope the pain subsides for you soon. x

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Hi Caleda,

Thanks for your response. I'd rather not take medication either. Most of the time I've gotten used to the burning, but every once in a while it goes nuts.

Socks, eh? Worth a try. I wonder if the nerves feel the support and are soothed?

Sounds like your neuropathy has ebbed -- nice to know. Who knows, maybe the toe tingling will go away for you too!

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I have no idea if it'll help post-chemo, but I hear some of the effects of neuropathy could be combated by L-Glutamine Powder (30 grams divided into 3 doses). I've given my mom this since her first line, and she's had no neuropathy with Taxol. She's on 2nd line, and I'm giving it to her again, but only 2 days before, and 2-3 days after her infusion.

Another cancer patient we know said her doctor prescribed glutamine to her for the neuropathy. Again, I'm not sure if this can work after the fact, but look into it, and also ask your doctor to see if it may help.

Lyrica is kind of a wonder drug in the sense that it works for so many things, including fibromyalgia. But yes, it can be habit-forming which is scary. There's also the possibility of bad side effects like suicidal ideation.

Outside of chemo/cancer patients, diabetics are the most prone to neuropathy, and many take over the counter supplements and vitamins like Alpha-Lipoic Acid, and also B6. Both can help the nerves from what I read, but I'm sure about dosages or anything.

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Sounds promising. I'll look into that. Thanks!

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I use ice packs. I believe it helps me. I was told to put them on during chemo infusions but only did this once. Kept the ice pack treatments going when I got home. There is currently a clinical trial testing cold for neuropathy.

clinicaltrials.gov/ct2/show...

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Heading to the freezer right now. I'm assuming 20 minutes on, then 20 minutes off? Repeat if necessary.

And thanks for the link.

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Ice pack is feeling good RonLitBer. Thanks.

Meanwhile, I checked some old posts and there were other tips that I'll research and check with my doctors before using.

(Other posts suggested gabapentin (sp), roll a tennis ball under your feet to increase circulation, acupuncture, B-vitamins (B6 50 to 100 mg daily), and pyridoxine. I'll check with my docs first, but I like the ice and the tennis ball, especially as I have plantar faciitis.)

You guys are the best.

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Nancy 222, glad to hear the ice packs are feeling good. I usually use them for as long as I can stand it, give my feet a warm up break and then put them back on. Sometimes I do one foot at a time. I try to get to it 2x per day but often just do it once. My guess (and it is only a guess) is that the ice works on your feet the same way that the cold cap works on your head to keep your hair when undergoing chemo. Interestingly I too had plantar fasciitis many years ago pre cancer diagnosis and found the ice packs helped with that as well.

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I froze a thickish bottle of water, wrap it in a tea towel and it fits my arch perfectly. I move it around a little and it's like a slice of heaven. Thanks again.

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My neuropathy was so bad after my one and only taxol that I ended up in hospital partially paralysed and unable to walk, feed myself or hold a cup. When I got out of hospital I started to take the L-G and A.L.A. at night as they work best on an empty stomach. 2,000mg of L-G and 1,200mg A.L.A. I took them for 4 or 5 months. It's almost gone now so please try them if you can. xxx

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Hi Kryssy,

Thanks for that information. Did you take that on your own or was it prescribed?

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Fingers were working too quickly. Meant to add that must have been a frightening experience. XO

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One of the girls here recommended it so I did a bit of research. Spoke to the oncologist too and he was in favour of trying anything as I was so bad. He was shocked at how quickly I responded. Hubby used to massage my hands and feet and once I could use my hands a bit I started knitting again- badly at first but the exercise helped. I was on morphine patches at first for the pain but knew that the fingers were getting better because I could type without it feeling like electric shocks. Yes, it was very scary especially when I was told that I could stay like it. I can never have taxol again. The tips of my fingers and toes are still slightly numb but they improve all the time. I found that cold made it worse. Had to wear gloves to get things out of the freezer. Good luck. xxx

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I have learned more here in the last two days than the last two years. I'm so glad you have relief.

And I wear gloves when I get things out of the freezer too! I have an old pair on the cupboard above the freezer. LOL.

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Try these exercises from the Dana-Farber Institute. blog.dana-farber.org/insigh...

I needed a 20% reduction of Taxol first line and afterwards did the exercises somewhat intermittently. Since being on weekly Taxol I’ve been more diligent and I do think it’s helping as although the neuropathy has increased it is nowhere as bad as first time round.

All the best!

Helen

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Thanks Helen. Those exercises look good (especially since I can do them at home).

Taxol was reduced for my 4th and 5th session and eliminated for my 6th.

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Try alpha loipic acid. It's a powerful antioxidant supposed to help. Vitamin power

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Thanks Liz. My doctor is going to love me when I come for my next appointment with my list of what should I take.

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Lipoic sorry messed up spelling.liz

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30 Grams of L-Glutamine powder in divided doses plus 100 mg Vitamin B-6. Worked for me. You've gotta get in the whole dose of the glutamine especially if the neuropathy has already settled in. Also it might be worth checking B-12 and Folate levels. Mine were seriously low during chemo and supplements helped platelets and the neuropathy. Best of luck!

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Thanks Kat. My list is growing. That's a good thing.

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Hello Nancy. It's really interesting to read all these responses. My mum has ended up with a totally numb foot and we think it was the Taxol. She had Carbo/Taxol as third line. (Also first line). The sixth Taxol was omitted during the third line chemo but I think the damage was already done. I did ask for advice ages ago and one thing was to soak the foot/feet in Epsom Salts. I bought mum loads from TKMaxx but I don't think she gets around to soaking much! But there's some really good advice here which I'll relay to mum. Best wishes. Jane X

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I hope some of these will work for your mom. It's concerning that she has a numb foot because that's when accidents can happen if you're not careful. Does she have a good GP or oncologist that you can run these by?

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Hi Nancy. I do worry about mum's numb foot and the risk of her falling. She has a good GP but she is also very stubborn and doesn't like me to interfere!! I'm heading down to spend next weekend with her. (I live over 200 miles away). Her doctor goes to church so I'll try and see if I can take him to one side and ask his advice. (Mum sings in the church choir - alto). But lots of useful hints on here. She is 82 this year and is amazing, especially as she'd been living with cancer for over four years now. Such an inspiration. Sending hugs. Jane XXX

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Hi Jane, my mom's 86 (87 in May) so I know all about stubborness. We won't be like that, will we? Hah.

My mom had breast cancer ten years ago and is going strong. My sister had breast cancer twelve years ago and is amazing. And then my aunt -- she's an old war horse -- three types of cancer and is 85. Your mom and my family are sturdy and truly inspiring.

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Wow Nancy, that's amazing. You're obviously all made of tough stuff! I think the older we get the more stubborn we are. Mum is fiercely independent. She's always been so healthy. Well, until OC but she's battled through three lots of chemo and her quality of life is pretty good. She's still driving and goes out. She's going to London with my sister next Saturday to see Mousetrap!! I take after her health-wise. On Sunday, my sister, brother and I are going to spend yet another Mothers' Day with mum. Every year I am amazed I'm spending yet another Mothers' Day with her, another birthday, etc!! Sending hugs. Jane X

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Those Mother's Day are special, aren't they? I really think that generation is a strong group. And, I like to think we're decisive, not stubborn, heh.

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Very special Nancy. I drove down M6 today and had a good journey. The end bit on the M42 was busy because of Crufts!! You are right when you say 'decisive'. My mum is very independent and I really admire her for that. I hope you have a lovely weekend. XX

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Hi Nancy

I was prescribed gabapentin for restless leg syndrome and find it helps the neuropathy too though nothing seems to make it go entirely. I will be trying a few of the suggestions above but here’s hoping something works for you as it’s not a comfortable feeling to have to put up with.

All the best, Jane x

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Katsmum, I know! I'm finding it's wearing me down. Mind you, I've just come out of a bout of cellulitis (and talk about pain!) and plantar fasciitis. Hope you find some more relief. A friend has restless leg syndrome and it constantly wakes her up. I'll pass your suggestion to her. (We always run things by our doctors.)

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My oncologist suggested Omega 3 and my GP told me to take B vitamin complex. I've taken both (and still taking them - my chemo finished end Jan) and although I've had a bit of neuropathy it's really very minimal and is now going.

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Thanks Cnmart. I was hopeful I'd get all I needed from food, but despite best efforts...

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Sometimes you've got to fight fire with fire 🔥 🙂

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I have read new data that links B6 with increase of cancer growth

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That's really interesting caf132. My oncologist and GP are both concerned that science doesn't really know how cancer responds to supplements. I'd clear anything I take with them first. They're okay with turmeric.

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Yes, in men referring to lung cancer who took high doses of B vitamins over a long term period (10 years), and if those men we're smokers. Please make sure when you make statements like this that you check what exactly the research has shown. No increased risk of lung cancer under similar circumstances was found in women.

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This was new data my doctor told me about for B6. I do not make things up. It was said so people could discuss with their doctors for a plan going forward. We as patients do not have all the new data physicians have access to.

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The discussions with our doctors are so vital and we all use our common sense. I've learned so much on this journey.

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No, I'm sure you're not. It would be useful to read about this research / new data. If you could get a link to the paper or its abstract that would be great! I'm certainly not advocating taking any supplements for a long period of time. I have nearly finished my course (about 4 and a half months) and all I can say from my experience is that my neuropathy was minimal and has nearly gone. I can't prove of course that it was either the omega 3 or the B vitamin complex (as opposed to my own system just not reacting badly to the chemo), but they were both suggested to me by my team and I thought I'd share my experience in case they did help and somebody else might benefit. All the best from Leipzig.

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Thank you, everyone! I am just finishing my first line treatment (planning to be in remission forever) but my numb feet drive me crazy. I keep thinking I am wearing shoes in bed!

My fingers are only slightly numb, but my feet feel like they are filled with crumpled newspapers.

I will try the vitamin suggestions.

Once again, thanks to all of you.

It is nice to not be alone out here.

Best wishes to all,

Laura

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Isn't it a wonderful feeling not to be alone, Laura? Good luck with the vitamins.

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My Onchologist prescribed 50mg B6 twice daily and it worked well last time. The neuropathy ended approx 7 years latet

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Hi Umcarroll,

How encouraging to read that your neuropathy has ended. Gives us all hope.

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it reallt took 7 years to fo away? Bless you. I hope the neuropathy went with the cancer. Keep up the fight!

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Hi Nancy, I don't think there's a cure for this, or so I'm told but what helps me is keeping my feet as warm and possible. This is more difficult with hands of course because you can't walk around all day wearing 2 pairs of gloves if you want to get on with anything. I do wear 2 pairs of socks during the winter and thick furry slippers when indoors.

Sometimes it's worse than others and as you're already aware can be painful. I think there are things you can buy which are supposed to help but I've never tried them.

I hope it improves for you soon,

Best wishes, Zena xx

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Hi Zena,

When my neuropathy flares up, my feet get overheated. Did that happen to you and you still kept them warm with socks? Enquiring minds want to know :)

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My feet have never overheated, Nancy. They're mostly always cold with the occasional normality in summer. I don't think I'd wear socks if my feet were hot, I definitely don't in the summer. xx

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Forgot to say Nancy, I take a 10mg dose of Amitriplyline. It's only a baby dose so it might be worth a try. xx

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Thanks again Zena. I feel so relieved that there are options out there.

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Hi ladies,

I’ve never done chemo but I have exactly the same neuropathy. Could this have another cause? I’m newbie here, is this a stupid question?

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No such thing as a stupid question! My friend has neuropathy due to his diabetes. His is really bad pain wise. And my father-in-law is diabetic but he can't feel the bottom of his feet. He has to be so careful when his toenails are being cut.

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Thank you Nancy222. I have thought about diabetes but glucose blood tests are ok. Does anyone have another idea?

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Nerve damage? My mother had a virus that went into her nerves (they think).

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It could be... I’ve had a sort of flare up recently. One red eye, diarrhoea, hot flushes that lasted for hours, asthma attack, rhinitis. Each symptom lasted for about a couple of days and another came in sequence. It has never happened before.

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That's a lot to handle in a short period of time. Hugs.

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Thank you 🤗

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Weirdly,

My neuropathy in my feet started in the middle of the first week of my becoming bedridden from the cancer, before I started Chemo.

Felt like my feet were full if crumpled newspapers and it hurt to put on my slippers.

Then, with Chemo, all kinds of weird symptoms happened to my feet, going up my ankles to my calves, like the freezing bit, where it felt as if my feet had been plunged into ice water. I had to wear my UGGS to bed!

Anyway, I only complained before my last round of Chemo, because the treatment was so effective in killing the cancer.

We lowered the Taxol, so I am not worse. Just my feet and toes. My ankles are okay.

But I swear it started with the cancer!

Kind regards,

Laura will

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Hi Laura, our bodies respond so differently to cancer. I'm sure you're right about knowing when your neuropathy started. Glad you're not worse.

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Hi Lindaura,

Now I’m worried 😕

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Do you have a good GP you can go to?

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Good? 🤔 I’ve seen 3 and they have asked for blood tests which showed increased allergy markers (IgE and eosinophils) and a slightly increased glucose, uric acid and LDL. I have more tests scheduled but tbh they look as clueless as me. Btw, I’m not in the UK...

Thank you for asking 🤗

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I am taking with success 20mg amitripyline daily. Have made much progress in a brief 3 wks.

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Thanks gmangen. You'll be out running soon :)

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Hi , I have had neuropathy in my feet only fortunately. I found the best thing for me is Glutathione which I bought from a Pharmacy. (I believe it is not the same a Glutamine). My neuropathy was becoming really painful and it was coming in my hands as well. I did some research on this and started taking the Glutathione capsules. ...one morning and night. (The strength of each capsule is 250mg) . I've been on it now for three months and even though I have been on Caelyx/carboplatin chemo ,my neuropathy has improved considerably. My oncologist is happy for me to use it as well.

Hope this is of some help .

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Glad you're getting relief, Gladles. You can bet I'll be researching this further and speaking to my doctors.

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Hi Nancy-I finished my chemo in October 2016. I developed bad neuropathy in both feet. i haver fallen a couple of times. I need to wear really good supportive shoes at all times. there has been no improvement in my neuropathy. I was advised by my chemo nurse to take Vit b12 and L-glutamine twice a day. i did nothing for me. I later read that you need to take it as a preventative during chemo.

I was sold a plan of laser therapy by my podiatrist. Very expensive as not covered by insurance-expensive waste of $.

Be careful ladies if you are on your feet all day as I am. I developed plantar facititis and did not know it until it moved up to my heel. I am still dealing with that.

Nancy-are you NED I hope? Prayers to all-those on taxol may need L-glutamine and B12. Please ask you ONC. Avoidance would of been favorable.

XX Carol

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Hi Carol,

I finished in September 2016 so we're almost sisters :)

Sorry to hear the (expensive) laser therapy didn't work. We always have hopes when we start something like that.

I'm just in the midst of a bout of plantar faciities so I know about your pain. The icing has really helped (and my neuropathy). Mind you, I've only being icing two days, but it's better.

My last C-scan showed a lesion on my liver which the oncologist suspects is a met from my low grade serous cancer. I'm doing a liver biopsy on Thursday so we can plan next steps. It's 1.9 cm but apparently deep in the liver. We'll see. I went through a scare with two ground glass nodules in my lungs. The lung specialist was going to wedge it out once the larger one reached a certain size. Luckily my body took care of it like the nodules were an infection. Were they really cancer? Who knows.

So, in reply to your question about NED, I'm not sure yet. Hope springs eternal.

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Hi Nancy-you are right, we are almost sisters in our journey! I also had ground glass nodes in my lungs last summer, it turned out to be an infection. It resolved itself on its own so I don't want to jump on everything too quickly. We so worry about everything we never used to.

There are inexpensive insoles on Amazon that really helped my PF. I even out them in my slippers So they were bearable. they are specifically for PF, but not real expensive. They come with stretching exercises for PF enclosed.

Please stay in touch! Let me know how your liver biopsy turns out. I hope its nothing.

XX Carol

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And I'm so glad your ground glass nodules were taken care of by your body. That's the way it should be.

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Thanks Carol. I'll let you know how the biopsy turns out. After the calcified nodules in my lungs, I'm not too wigged out about this. I'm hoping it's liver toxicity cause from eating too much cinnamon. One can hope.

I'll check out the insoles.

I know I said it before, but this has been such an amazing outpour of information for me. And I know others have benefitted too. I've been going through some of the older posts and feel so much stronger for the information there. I've always been positive, but now it's based on others' experience. That helps.

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Why cinnamon?

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Good move on your part not to freak out about the liver until you know its something to freak out about. I did that when I developed bad cramps low in the pelvis. They would not let up. My ONC sent me in for a CT scan. Thats where they found the ground glass nodes but only extreme constipation for the lasting cramps. I have learned a lot about myself and the wisdom of others on this site. there are so many supportive people here. I pray for all of them.

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I've had ongoing chemo for nearly a year now and from the beginning I used Elasto-Gel Mitts and Socks. They are kept in the freezer and used just before and ruing chemo - changed over every 30-45 minutes to keep cold. Neuropathy was kept away almost entirely, and only very slightly affected latterly (very very mild). I'm convinced they did the trick. Problem is they are from the States and they are pretty expensive. But I'm delighted that I am pretty much free of neuropathy and the chemo nurses have been very impressed. I guess the same effect could be had with ice packs, but these are pretty comfortable to wear and made for the job.

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As soon as I read this, my hot feet went, ohhhh, that sounds good. I'm going to check into this. Thanks Makehaywhilesunshine.

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Not sure they're of use after chemo. I used them during from the beginning.

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I'm willing to try. These Elasto-Gel Socks sound like they'd contour to your foot nicely. Thanks again.

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