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Cold Gloves and Socks to prevent neuropathy

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kaaadams
kaaadams Member Posts: 33

Hi everyone! I see there has been a couple medical studies done that do show cold gloves and socks decrease the SE of peripheral neuropathy! My husband and I love hiking and camping (we just visited Sequoia, Kings Canyon and Yosemite National Parks this summer!), so preventing and avoiding this SE, esp. long-term possibility, is very important to me. I begin Taxol 10/22/19 and it is a chemo that is worse for this SE. However, I'm having trouble finding where I can purchase these and also want to know if anyone has used these and recommends a certain brand.

Please help if you can as I'm starting chemo 3 weeks from today!

Thanks in advance for sharing!


Comments

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    Here is what I found:

    NatraCure cold therapy socks with gel ice. Freeze them at home and transport on ice. I have two pairs so I can swap mid-way, but I only need them for an hour. Taxol is a long infusion so ask if your cancer center will let you use their freezer. Mine will not.

    Icinger Power cold gel gloves.

    Both from the usual online everything store.

  • kaaadams
    kaaadams Member Posts: 33
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    Ooooh, hadn't been told how long Taxol infusion is yet. That's a bit problematic, but your recommendation is appreciated ShetlandPony! Did these save you from the long term SE of peripheral neuropathy?

  • legomaster225
    legomaster225 Member Posts: 356
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    I used the same socks. Small lunchbox size ice packs from Target worked also and allowed me to swap out the thawed ones for frozen. I also used ziplock bags filled with ice to hold or even a frozen water bottle. I just brought them all in a large lunchbox to chemo and they stayed frozen. I stack a frozen coke during chemo as well hoping to avoid mouth sores. It worked or I got lucky. i will take either . Good luck with your treatments.

  • LoriCA
    LoriCA Member Posts: 671
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    I use the same NatraCure socks. I also agree with getting at least one extra set of the inserts (or find/make another ice pack that will fit). Taxol infusion is typically one hour, and some women like to start icing before the infusion begins and leave them on for a while after the infusion. I find that the inserts needed to be changed after no more than 40 minutes, so 2 sets is the minimum you'd need.

    I use a freezable lunch bag to carry them in, then I put that inside another hard lunchbox (I live in a warm climate). Depending on what drugs I am doing and the order I'll get the taxol, my center will keep them in their freezer for me until I am ready for them.

    I wear a 7.5 shoe. When I ordered mine they were out of the small (at all online sources including NatraCure's website) so I had to order the large. I was afraid they would be too big to be effective but that's not the case at all, in fact I think they'd be snug on someone with a large foot. So if they are again (still?) out of the small don't be afraid to order the large even if your shoe size is a small.

    I don't use gloves because I haven't had a problem in my hands, but I have seen many women recommend holding frozen water bottles.

  • kaaadams
    kaaadams Member Posts: 33
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    Thank you SO much Legomaster225 and LoriCA! Glad to have a brand now, know that Taxol is a one hour infusion and solutions for keeping extras frozen! God, you are strong Lori. To see all you've been thru and see you helping out others here at this org. I really appreciate you girl, and sending you love and light.<3


  • minustwo
    minustwo Member Posts: 13,128
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    I took an ice chest and put my feet literally in ice. For my hands, I put frozen peas in zip lock bags and changed them out 1/2 way through. Taxotere infusion is usually an hour. You should ice at least 15 minutes before & after.

    That said - while the ice kept me from losing my nails, it did not stop me from getting neuropathy. My fingers have mostly regained feeling, although it's difficult to judge things like how hard to swipe a phone. Good news because at first I couldn't zip up my pants. My feet are mostly dead blocks of ice. The theory is that the condition can improve for up to two years. I'm more than 5 years out, so what I have it the way it is. And there is no treatment except drugs if you have pain. I am lucky & grateful that I don't have pain.

  • kaaadams
    kaaadams Member Posts: 33
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    MinusTwo- Damn girl, you went all the way with the icing too! Don't know if could hold my feet in ice that long! This is my greatest fear, but I guess if it happens, I'd be happy for numbness instead of pain too. That is a silver lining in your loss. I can't imagine hiking on trails without any feeling in my feet. How is your mobility? I'm a nurse, and i appreciate your honesty. I take care of many diabetics and their foot neuropathy from it causes numbness that makes it very difficult to maneuver on stairs.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    I did not ice during my five cycles of Taxol, because I did not really know about it. The plan was for 4-6 cycles, and when I reported a certain level of numbness and tingling in my fingers and toes after #5, my onc said we should stop so there would not be permanent damage. My scan looked great at that point, so we stopped. The neuropathy did go away. I think my onc had the experience to know. So keep your onc informed of any symptoms. Interestingly, I first noticed the neuropathy in my hands after unthinkingly putting them under the warm blanket during an infusion. Hmmm. Recently I started eribulin/Halaven, and decided to use the cold socks and gloves this time. I am a dancer, and I need to feel my feet!

  • kaaadams
    kaaadams Member Posts: 33
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    Thank you ShetlandPony, for your input. I've read one small European study done with patients wearing one icy glove and one icy foot, and the results were statistically significant. There's one more study I can't think of right now. I've ordered the socks and will try to figure out something for my hands/fingers because it's at least worth a try!

    MinusTwo, I'm so sorry for what you're going thru and the toll that Taxol is taking from you. I'm afraid, from what I've read here, (because doctors don't seem to want to tell you about chronic adverse effects of chemo that are lifelong) that it's a crap shoot. I gotta try something though, or I may regret it for the rest of my life. Hell, I may regret ever taking Taxol the rest of my life. That is my choice to make though, and I still haven't decided. It's tempting to just go with aromatase inhibitor alone; esp with my high ER+ tumor. My KI67 was 90% proliferation rate though, and even though I've had a mastectomy with no lymph nodes showing cancer, I'm afraid I gotta let em kill off any rogue cancer cells that escaped.

  • OCDAmy
    OCDAmy Member Posts: 289
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    I just used large plastic zip lock bags covered in a towel for my feet and hands. The chemo nurses filled them up ice for me when I got there so I didn’t have to bring a cooler. No neuropathy and my nails were fine.

  • cowgal
    cowgal Member Posts: 625
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    What about using the cold socks and gloves in the winter? I am supposed to start Taxol next week and it is starting to get cooler around here. I can't imagine how you all are able to keep you hands and feet in ice but if it works and I don't get sick from being cold, it seems like it is worth a try.


  • minustwo
    minustwo Member Posts: 13,128
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    kaaa - tough decisions. I still walk OK but my balance is iffy & I have to watch my feet to see what's on the ground since I don't feel it. I don't hike on really rocky trails anymore and sadly, I can no longer hop out on the bow of a sailboat to adjust the sheets or toss lines. I still do a lot of active stuff, but not "tree" in yoga class anymore.

    Cowgirl - Yes - it was cold. I sat in my heavy, lined London Fog coat with two sweaters underneath, two blankets on my lap and a stocking cap on my head.

    And frankly the more I read the more I think it could also have been the Carboplatin and not just the Taxotere. Ah well, my MO gave me the choice to continue when the numbness started but the advice he would give his mother because of my HER2+ cancer was 'soldier on'. My decision - so I have dead feet but I'm NED.

  • mountainmia
    mountainmia Member Posts: 857
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    Here is a thread from earlier this year with some tips that might help

    https://community.breastcancer.org/forum/69/topics/871625?page=1#idx_28

  • kdrake1007
    kdrake1007 Member Posts: 55
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    @kaaadams,

    This is what I used for my hands. Used the Velcro strap to roll it into a tube and put my fingers in. Stayed super cold during the whole infusion. I have a tiny bit of neuropathy in my fingers. Slightly more on my right hand since I took it out more often to take a drink or check my phone. I also wore cotton gloves and used the Natura socks with gel inserts. Those did work quite as well for me even though I swapped out the gel inserts every 30 minutes. Neuropathy in my toes that still hasn’t gone away 1 year later.

    https://smile.amazon.com/gp/product/B001QFZL1Q/ref=ppx_yo_dt_b_asin_title_o08_s01?ie=UTF8&psc=1


    I also cold capped during all of my chemo treatments, so I was one shivery block of ice!!

    Good luck with the icing! Definitely worth it IMHO!

    Kim


  • olma61
    olma61 Member Posts: 1,025
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    I had the elastogel slippers and gloves but midway through my six months of Taxol, I found the NatraCure and purchased those because they were smaller, easier to carry and less room in the freezer. The elastogels were discontinued and anyway the price was much higher - I really liked the NatraCure better in all respects. I wound up never using the gloves at all but just dipped my fingers in cups of ice from the ice machine at the infusion center.

    I have no neuropathy in hands or feet. Some of my nails did go bad, which is another effect of Taxol that the freezing can alleviate. I lost a toenail but it grew back quickly and I had problems with the fingernails on my right hand (lifting and infections) but none fell off completely. I cut them down really low when they started looking weird, used neosporin and tea tree oil on them until but still wound up taking a course of antibiotics to get rid of the infection.

    Interestingly, I had been less consistent with freezing the right hand, I was always taking it out to play with my phone or read or drink something....and that is the hand where the nails went bad. So, for me, I'd have to say the icing did help.

  • cowgal
    cowgal Member Posts: 625
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    For those of you who also cold capped, which one did you use and did it work? I realize that hair is the least of my worries but didn't know if it would help with more than just hair.

  • cowgal
    cowgal Member Posts: 625
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    Another question. Do any of you suffer from lymphedema? I wear day and night compression on my left arm and hand and wonder if keeping my lymphedema hand in ice for treatments would do more harm than good or if the benefit of avoiding neuropathy outweighed that.

  • kaaadams
    kaaadams Member Posts: 33
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    Thank you to all of you SO much! I am eternally grateful to you, my sisters that have gone before me through this valley of life. You all have made it thru and give me hope. I do appreciate so much the little things in life: a sunset, the sun and wind on my face, a walk in the park, a flower from my sister... hoping you all can too.

    I've ordered the Natura cold socks, and am looking back on your links for cold gloves also. My MO says they use Paxman cold caps and sell them for $2200!!! That seems like highway robbery! Haven't priced them yet, what do you think? I'm freezing an eye mask after seeing the eyebrow cold app, but I feel like I'm overdoing this cold thing! I may just do hands and feet and get caps and a wig. Not having eyebrows or eyelashes must be pretty weird, right? Sounds traumatic honestly. I don't wear much makeup, never have, and never do my eyebrows or worn false eyelashes. I'm afraid I'm on an enormous learning curve.....

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    I decided that for me the discomfort, time, and expense of cold capping would be too much. Obviously for someone else it might be totally worth it. You can talk to a rep on the phone and get details to help you decide. Each chemo has a certain amount of time before and after that you need to wear the cap. There are threads here on BCO about cold capping.

    I did not wear makeup until Taxol. Then as the weeks went by, I added more and more. Oh, look, I need some eyebrow mousse. Oh dear, eyelashes going, let’s get some eyeliner. Hmm, dark circles under my eyes, I think I’ll get some concealer. Until I had the whole kit. Again, totally personal choice.

    If you want a wig, save some of your hair to color-match. I got a pixie and saved the ponytail. I let the pixie fall out as it would. If you want a buzz cut don’t shave close as it can irritate. Look online for instructions and measure your head to see if you need a petite, average, or large wig cap. Look at return policies carefully.

  • legomaster225
    legomaster225 Member Posts: 356
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    kaaadams, yes, having no eyebrows or eyelashes is pretty weird but you would be amazed at what makeup can do. I am not a big makeup person but I learned quickly to draw on some eyebrows and a little eyeliner makes it look like you have lashes. My eyelashes were the last to go and all my hair started growing back after about the 5th taxol treatment.

    I too looked into cold capping to keep my hair but once they told me I couldn't wash it often and could not use my curling iron I said forget it. I hate being cold as it is and knew it would be difficult for me. My hair is very thin, fine and poker straight so it would have looked worse than being bald. Some women have great results though. It was just a choice I made.

  • olma61
    olma61 Member Posts: 1,025
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    Yes I went without the cold capping too. I thought it would be very uncomfortable and I was more concerned about losing function in hands and feet (and loss of fingernails!). And the expense! I am self employed so I don't have to show up anywhere and look a certain way. But I did find GREAT wigs that I still wear, even though I now have hair. I have hard to manage curly hair and the wigs just really look so much better than my own hair would especially on humid days. Plus, I am gray now and really do want to avoid dye. In addition to worries about carcinogens, the dye was such a hassle, wigs are so much easier.

    People constantly told me they did not know I had a wig on. And here is one of my secrets - cheaper wigs. The first wig I wore was actually a fall aka half wig that I already owned, I wore it sometimes if my roots were coming in. I would cover the front with a wide head band or a scarf. It was one of those Paris Hilton bandit things. It looked like a nice shoulder length blow out. No one who didn't know me, thought it was a wig. After that I bought some wigs from Forever Young which are in the 50 to 70 dollar range and in my opinion look great and very natural. My MO gave me a wig prescription and my insurance would have covered an expensive "medical wig" but I just never bothered. But if you want a free, high end wig, see if your insurance will cover one. Medicare I am pretty sure does not, but many insurances do if MO calls it a "scalp prosthesis" and you go to a wig shop that specializes. My center gave me a list of five stores to go to.

    Human hair wigs can be hard to care for especially the longer ones. Give me the cheap ones, I run them into the ground and throw them away without qualms! Also, the cheaper "heat friendly" wigs have a little bit of texture to them that I think makes them look more natural. Currently, I have an expensive Jon Renau and a Noriko that cost $160 but I like my forever young wigs the best.

    Eyebrows, yeah. Mine are still not all the way in. I started with thin ones from over plucking years ago but now they are worse. They were thin before but I could go without pencil if I wanted to. Now, no. They've grown in very spotty and patch-y. I am still using brow makeup. My lashes also were stubby before but now...I can barely find them (but don't fear because everyone is different, I just happen to be a sad case with brows and lashes) When I was fully bald at the cancer center, the NP asked me if I had lost my hair yet...the wig fooled her and so did my brows. Back then I was using a pencil and then filling in with WonderBrow which is fantastic in my opinion, and very smudge proof & water proof. Sometimes now I use pencil with brow powder over it or with a waxy taupe-ish "brow pomade" by elf that comes in a small jar.

    Anyone who does want to look into cold capping, I think there is pinned thread here somewhere with a lot of great advice, especially if you have to "do it yourself" and your center does not have the caps on hand.


    PS - About the cold gloves - you should still be able to find the Elastogel mitts for sale. Probably on Amazon. Only the slippers were discontinued.

  • kaaadams
    kaaadams Member Posts: 33
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    Does anyone know if I should wear thin cotton gloves inside my Icinger Power cold mitts? I know the icy socks have fabric between the skin and feet. Anyone have any experience with this? I don't want to get frostbite!

    Thanks!

  • OnTarget
    OnTarget Member Posts: 124
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    Kaaadams-My brand of mitts came with very thin liners.

  • kaaadams
    kaaadams Member Posts: 33
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    thanks so much OnTarget! I'll wear my thin cotton gloves then. Last day before my first Taxotere and Cytoxan chemo treatment! I feel like I need to do everything before i start chemo, but I'm trying hard to relax and realize there is life during chemo. We really do up our house on Halloween a lot and DH and I pass out candy to all the kids and have a lot of fun. This year, he's on call Halloween night, plus I realized passing out all that candy (we must get 300+ kids) would not be good while I'm immunosuppressed isn't the best ides, so we're skipping it for the first time since our kids were little. It's a bummer but takes a load off from all the decorating our front porch.

    I see you began your TC regimen 8/6/19. How is it going for you so far?

  • Marmotka
    Marmotka Member Posts: 19
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    Hi everyone, I've read all the posts here. I started taxol today and used the lined gel socks which I froze and carried in a cooler.

    My issue is that my toes were so cold, and hurting like hell, like I was getting frostbite (I live in Canada so I know what it's like), especially in my right foot. Now it's 6 hours post chemo and my toes hurt a lot, especially the right ones. Is that the effect of mild frostbite or is that already neuropathy? It seems unlikely for a first round administered weekly (lower dose). How to differentiate the two? How to make sure I don't damage my feet while trying to prevent the damage in the first place? Do your socks hurt you that much when you put them on? Maybe mine are too cold? (I have a deep freezer at home, not the fridge freezer).

    Thanks in advance for the insights.

  • lms458412
    lms458412 Member Posts: 289
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    They were too cold for me and really hurt, so I wore socks underneath. I still got neuropathy, but it's so very mild and has improved over time. I am glad I found a way to stick with the icing otherwise I feel it would have been worse.

  • minustwo
    minustwo Member Posts: 13,128
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    It's unlikely you'll feel the effects of neuropathy after the first dose.

    I am always cold - cancer or not, everywhere. Instead of the sock I used frozen peas. Still got neuropathy so I'm not a poster child.