Neuropathy in feet - any advice? TNBC

KRW

Hi everyone

I'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

byo_boy

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

jennyss

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

KRW

@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

Will keep you posted on progress and advice.    Kathy

KRW

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

GinGin

👋 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

@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.

KRW

Hi @byo_boy @jennyss and @GinGin - thought I'd give you an update on my oncologist appointment prior to chemo today.  My oncologist confirmed it was the Taxol that was the culprit for the neuropathy. He was concerned about it from my symptoms and decided that as I've already done 6 sessions of Taxol, he would like to pull it from the chemo cocktail at least for today and the next two sessions.  He said the nerve damage can be permanent and not worth risking.  I asked if stopping it puts me more at risk with the cancer fight.  He said that I had done 6 sessions of it which was worthwhile and from the chemo cocktail, if any one drug could be foregone, Taxol is it - not worth the risk.  So I'm happy he is confident it is the right decision.  Of course it meant the lovely cold socks I'd bought were not needed at all - but hey, I was prepared for any eventuality and that's ok.  I'll continue with doing the exercises that I've found on YouTube - https://www.youtube.com/watch?v=VvfMWb6jvT4   as I do find they help. I also have a little ball with spikey nodules that I roll around under my feet and that helps too.

Hope all this information is of help to others and wish you all the best in your journey ahead.  Thanks for your support.  Kathy

GinGin

Hey Kathy, thank you for sharing your progress. Good to know your oncologist is looking out for you,

And What coincidence! I actually do a number of exercise from Kelly’s YouTube. She is one of the better ones on YouTube. Gotta to be careful who we follow on YouTube as I found some of them to be incorrect (after confirming with my physiotherapist). 

All the best for the rest of your treatments.

KRW

@GinGin oh I'm so glad to hear that about that YouTube video - I was hesitant in sharing - phew!

byo_boy

Hi Kathy,

Thanks for your update and the video, those resources are great thank you We've also ordered a set of the cold gloves / socks (plus spare ice packs) from Amazon which we'll definitely be using from the minute they arrive! From what I've read and from the personal experience of lovely people like @GinGin it seems to be worth the effort - our Onco nurse even encouraged it when we spoke to them.

It's really interesting how they just stop the rounds rather than reducing the dose - my first instinct would also be to question whether I'd be jeopardizing any potential for additional benefit from the treatments I'd be missing, however it sounds like they're all over it. How many more sessions did you have left? Rebecca's got a dose-dense 4 rounds of AC + 12 weekly Taxols after which sounds like a LOT - hopefully we'll be able to manage through them all and get a good response.

What's on the cards next for you in your journey? Hopefully a chance to at least take a breath and pat yourself on the back for all the hard yards you've put in

Take care!

George

KRW

@byo_boy Such a warm message from you, thank you.  Yes, I don't think I was expecting a "stop altogether" response either but was at least confident to talk it through and question it.  In speaking with the infusion nurses afterwards, they both agreed it was a 'normal procedure' for this scenario (which of course doesn't happen to everyone).  

I'm so glad you've got Rebecca's back on this at the outset - I guess we're all learning on this journey and I likewise wish I'd had the cold socks from day one. I'm confident they will protect Rebecca from the risk.

I have triple negative breast cancer and they hit it hard right from the start.  So I've been on weekly cycles of Carbo and Taxol and every 3 weeks also had immunotherapy added to the drug mix.  I had done 6 weekly sessions before today as part of a 12 week regime.  After this 12 weeks I then progress to AC every 3 weeks - 4 times (12 weeks) which I fear as they call it the "red devil".   So it is 6 months of chemo.  Then I will have surgery - either lumpectomy, mastectomy or double mastectomy with possible reconstruction (which at this stage I think I won't be doing - the cost even with health insurance is prohibitive).  Then following surgery, possibly radiation therapy depending on how the tumour has reacted to chemo AND then another 9 sessions (every 3 weeks) of immunotherapy.  Triple negative breast cancer is aggressive with a high risk of recurrence, which is why they hit it pretty hard.   So a long road ahead for me.  But the bottom line is to become cancer free, so I'll do what I can.

I sincerely hope that all the treatment for Rebecca also results in that cancer free outcome.

KlpPerth

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.

KRW

Hi @KipPerth

I'm sorry to hear that you're having a tough time of it with your treatment.  It is a hard slog isn't it!!

I've never heard of ALA before and am going to look it up.  Are you able to purchase it over the counter or does it need to be prescribed?  Is your oncologist aware of the use of it and approves?  I just know mine wants to make sure anything I take doesn't counteract the chemo drugs.  I only now have slight neuropathy in my toes and do exercises as well to try to manage it.

Thankfully I am pass the IV chemo stage of my treatment - following the double mastectomy I'm on an oral chemo and continued immunotherapy.  (Are you on immunotherapy treatment as well?)

In terms of your progression to the Red Devil, I can understand your concerns as it was far more brutal on me than before.  However, I think my fear of recurrence with my Triple Negative type breast cancer spurred me on to throw as much at the cancer as possible.  But you'll obviously get the advice from your medical team and make what decision makes you feel the most comfortable.  It is certainly a battle we are going through.  I wish you warrior vibes and all the best.  Regards Kathy

Afraser

For what it’s worth, I found A/C much easier than Taxol. I had A/C first - lost my hair but I was prepared for that. No nausea, no fatigue. Taxol on the other hand - peripheral
neuropathy, bloody nose, no taste buds! You can never tell. Best wishes! 

KRW

Hi @Afraser I am so sorry to hear your difficult journey.  I am now on oral chemo following my double mastectomy and I'm now dealing with new more effects.  I do hope that it is killing all the nasties in there, because my gut is definitely not liking it!!

Wishing you the best with your journey ahead.