Hi everyoneI've TNBC and am 6 treatments down with the first Carbo/Taxel/immunotherapy regime. For part of my infusions, they put cold gloves on my hands to reduce the risk of neuropathy there, but didn't offer anything for the feet. They suggested I go online and purchase my own cold socks to wear during treatment.Last week my toes started feeling numb and then yesterday my heels started feeling sore when I walked. I walked a bit at the shops this morning and my feet felt odd the whole time. I'm assuming this is all related to neuropathy and I must admit I'm a little freaked out. I've purchased some cold socks now online and will start wearing them during treatment, but I'm worried what damage has been done already. Be interested to hear what experiences others have had with this, what they've done about it and whether it has resolved after treatment finishes. (NB I'm putting this in the general discussion arena as I thought it may not be simply TNBC related?)Kathy

Hi Kathy - Unfortunately I don't have anything to add that might be helpful for you, but I am interested to hear about your experience with the cold gloves (and socks too for anyone else who might have used them). Do you feel like they helped at all? Were they provided by the treatment team, or did you have to buy your own? Our Medical Onco nurse seemed all for it and mentioned that a lot of people bring their eskies and stuff in for treatment, so it seems quite common.I've found a couple of different options on Amazon, but I'm not sure how effective they'd be, or how long they last even.Hope the new socks will help and that you'll be back to tapdancing soon ;)George

👋 all, I did ice when I was on Taxols with blessings from my medical oncologist. My center provided the gloves but they don’t carry any for the feet. So I purchased online for my feet. I bought two sets, one from aurora direct (same ones as Kathy purchased and another set from Amazon. Long story short- did it help? I strongly believe it did. My hubby thinks I would have neuropathy earlier if we didn’t use ice. If you plan to use ice mitts, make sure to have an extra set as they don’t stay cold for long. we bought esky and hubby would buy ice from the petrol station ….And yes, over doing the exercises may over activate the nerves, so it’s a real balancing act 🙄. There’s a fair bit of discussion/tips on ice mitts on this network. I used the search button and read through what the other ladies recommended and actually also messaged some of them to clarify some questions I have. We are so fortunate to have this online network.by the way, your medical oncologist will be asking about what side effects you are experiencing, so make sure to let them know and they will reduce the dosage. In my case, my medical oncologist stopped me from having my last Taxol due to escalating neuropathy on my feet. (Which is why I mentioned, the mitts must be kept very cold and needs to be swapped even before you think it’s no longer cold).All the best with the chemo treatments.Gin

@GinGin Thanks so much for sharing your experience and thoughts and tips. I must admit worrying that a treatment might be foregone or something because of the neuropathy, which would worry me, but I know the oncologist will balance where I'm at and what I'm feeling to make that decision. Yes I'd read about the ice packs in the bought sets not lasting cold as long. The mits they give in the infusion centre for the hands are icy for a long time, so I'll continue using theirs I think instead. Especially as it seems to be working, as I don't have any issues in the hands - don't fix what ain't broke hey. But I'll ask them to put some spare ice packs in their freezer (if they'll let me) to be able to rotate the foot ones. Thanks again Gin, really appreciate you jumping on here.

hiya..I'm 2 treatments in same regime after anaphylaxis second round so had a week off.I'm taking 600mg ALA daily after nurse friend sent me link to study just out of Adelaide ( medical journal ) saying it reduced Taxol related neuropathy if taken everyday ( doesnt interupt efficacy of treament so take everyday including and especially on treatment days. I got the gloves and feet cold thingys from Temu. I've resisted the company on other grounds but thought since we need 3 sets for a one hour infusion, the cheap cost is justified. I hope that helps.After reaction to single taxol I'm not 100 percent on progressing to the AC/"red devil " mix later on the cost benefit analysis. The lump in my boob pretty much broke down from rock to squoosh after the first week so not happy to go along with the set and forget schedule and want to only take what logically makes sense to me ie scans still showing up dodgy cell growth.

Hello @KRW,Some years ago now I developed hand/foot syndrome during chemotherapy. I did not have TNBC. I used home made ice-mitts at home for hands and feet between treatment. Here is a photo of my PPE (personal protective equipment) for a chuckle! The ice-brick is inside the mitt. I also had blisters on hands and feet. But the good news is that the symptoms disappeared within weeks of finishing chemo - just in time for radiotherapy! Best wishes for your treatment from jennyss in Western NSW

Neuropathy in feet - any advice? TNBC

15 Replies

GinGin
Member
10 months ago
👋 all,
I did ice when I was on Taxols with blessings from my medical oncologist. My center provided the gloves but they don’t carry any for the feet. So I purchased online for my feet. I bought two sets, one from aurora direct (same ones as Kathy purchased and another set from Amazon.

Long story short- did it help? I strongly believe it did. My hubby thinks I would have neuropathy earlier if we didn’t use ice.

If you plan to use ice mitts, make sure to have an extra set as they don’t stay cold for long. we bought esky and hubby would buy ice from the petrol station ….

And yes, over doing the exercises may over activate the nerves, so it’s a real balancing act 🙄. There’s a fair bit of discussion/tips on ice mitts on this network. I used the search button and read through what the other ladies recommended and actually also messaged some of them to clarify some questions I have. We are so fortunate to have this online network.

by the way, your medical oncologist will be asking about what side effects you are experiencing, so make sure to let them know and they will reduce the dosage. In my case, my medical oncologist stopped me from having my last Taxol due to escalating neuropathy on my feet. (Which is why I mentioned, the mitts must be kept very cold and needs to be swapped even before you think it’s no longer cold).

All the best with the chemo treatments.

Gin
KRW
Member
10 months ago
Hi @jennyss Thanks so much for your comment and thoughts. I think Hand-foot syndrome is different to the neuropathy? It is more swelling/redness/blisters, but I'm sure cold packs would definitely relieve some of those awful symptoms. Love your homemade remedy for the gloves - you go girl! I'm also so glad to hear that your symptoms subsided once the chemo treatment stopped. Best wishes to you in moving forward. Kathy
KRW
Member
10 months ago
@byo_boy George, thanks for your response. This breast cancer journey really does raise lots of questions, but I'm so glad we have this forum to share thoughts.

In my case, the cold gloves were offered from day 1 infusion and explained to me as being a way of stopping the chemo drugs during the treatment (actually restricting the drugs going to those extremities - bit like a cold cap they can use for stopping you losing your hair). In hindsight it does seem odd they didn't offer it for the feet and only the hands. For me, the hands have been fine and I hope that means the cold gloves have been doing the trick. I only wear them 15 mins before the particular drug and afterwards. I hadn't thought of wearing them outside of the infusion and from reading up on neuropathy, the cold gloves in those circumstances are more alleviating the pain, not stopping the chemo drugs. I could be wrong!

I found it hard to simply go online and buy something from Australia for feet only, so have ended up ordering this set from the US and am still awaiting its arrival: https://www.amazon.com.au/gp/product/B0BVKKMW7D/ref=ppx_od_dt_b_asin_title_s00?ie=UTF8&th=1

I was able to buy a set of just cold socks from Australia and they have arrived and I'll try them out tomorrow at chemo- here is that stockist: https://auroradirect.com.au/collections/ice-cold

I'm really hoping it helps stop any progression of the neuropathy in my feet. I'll also be speaking with my oncologist about it tomorrow before chemo. I've also been on YouTube looking up exercises to help the circulation in the feet now that neuropathy has started - but of course it says "don't overdo the exercises, because it might overactivate the nerves" - arrgghh!! How much is too much??

Thanks for making me smile with the tapdancing comment - I have 2 left feet for dancing already :smile:

Will keep you posted on progress and advice. Kathy
jennyss
Member
10 months ago
Hello @KRW,
Some years ago now I developed hand/foot syndrome during chemotherapy. I did not have TNBC. I used home made ice-mitts at home for hands and feet between treatment. Here is a photo of my PPE (personal protective equipment) for a chuckle! The ice-brick is inside the mitt. I also had blisters on hands and feet. But the good news is that the symptoms disappeared within weeks of finishing chemo - just in time for radiotherapy!
Best wishes for your treatment from jennyss in Western NSW
byo_boy
Member
10 months ago
Hi Kathy - Unfortunately I don't have anything to add that might be helpful for you, but I am interested to hear about your experience with the cold gloves (and socks too for anyone else who might have used them). Do you feel like they helped at all? Were they provided by the treatment team, or did you have to buy your own? Our Medical Onco nurse seemed all for it and mentioned that a lot of people bring their eskies and stuff in for treatment, so it seems quite common.

I've found a couple of different options on Amazon, but I'm not sure how effective they'd be, or how long they last even.

Hope the new socks will help and that you'll be back to tapdancing soon ;)

George

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Neuropathy in feet - any advice? TNBC

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