Hi everyone,I was diagnosed with Her2 positive BC in April. I have been having AC dose dense chemo for the past six weeks (3 x 2 weeks) and have my last one on Thursday. I've tolerated it well which I credit partly to walking every day, between 30-40km a week. I start Paclitaxel chemo 12 x weekly two weeks later and I have been reading about Taxol based chemos being very likely to cause neuropathy. I'm keen to do as much as I can to avoid this. Online there are some new studies showing cold gloves and booties reduce these effects. I can see that it is commonly discussed on the UK forums.Has anyone used cold therapy while having chemo? I know that there is much discussion and use of cold capping but I can't see anything on the forums about using it to prevent neuropathy. (I considered cold capping but was told by my oncologist it didn't work well with AC.)The gloves and ice packs that are recommended (Elastogel, Chillpain) all seem to be made and sold in the US and not here, and they cost so much after the exchange rate, taxes and postage. I was wondering if there were any local alternatives people knew about, or if they had made their own alternatives, frozen peas, ice trays or ice packs?Thanks

Hi @poodlejules,Fantastic information, thank you :) That's very encouraging. I like your homemade hacks!You were obviously committed and I'm so glad to hear your efforts paid off. I'm very encouraged that you ended up with no neuropathy.Fascinating too to hear you succeeded despite minimal support from the hospital. It is obviously easier to go with the flow, so good for you. I think it will be more common in the future, as the studies say it works. I'm just surprised that it doesn't get more exposure when cold capping is now so well known. Hair will grow back but neuropathy can be permanent.I will now persevere even if they don't have experience safe in the knowledge that it will one day be common practice.And I have a port so that won't be an issue.I'll make sure I use this week's chemo to sort things out in advance.Thanks for your message.Susie x

Hi @SabbraThat's great, I'm glad the information helped you. I have ordered gloves and socks too. That's a great price. Mine were a bit more because I got them separately. I'm a bit scared about the cold!I'm nearly at the end of my AC chemo journey so message me if you have any questions. The injection and chemo make you constipated so I take coloxyl tablets for the first few days, and I read that Claratyne can help stop the bone pain that can come from the second day injection, so I take that too.TMI lol?Susie

My Chemo was 4xdose dense AC followed by 4xdose dense Taxol (all fortnightly), last one was eight days ago. I have lost four toenails, the neuropathy is definitely worse on my feet than my hands, the tingling and numbness tends to be worse at night. I was offered gloves at the hospital which I didn’t take, but not socks, Tbh after cold capping for two sessions then giving up I didn’t want anything else cold, especially as my Taxol infusions took 3 1/2 hours. The neuropathy started for me as soon as the Taxol did, I spoke to my oncologist about it as I saw him between cycles but it was never bad enough to delay Chemo for (I have Inflammatory Breast Cancer so I am very keen for no delays). Hope what you have bought helps.

Jenny @jennyss what a great homemade hack! Great you could show us pictures of it. Very resourceful. Thanks so much for sharing your experience x

Hi @strongtogether,I would definitely recommend the socks with some extra ice packs around them - they last well, the full hour and a half with the extra ice packs to keep them cold. I rest my feet on the esky I take. The gloves lose the cold quite quickly and are very expensive. I think you could save money and not get them. I use them and then add ice gel packs inside and then use the medium bodichek gel packs on their own, gripping them so they cover both sides of my fingertips especially. I have a photo of this I think, I'll see if I can find it to post. Its great you are going to help out with this because its a bit of a two person job.I would invest in the Bodicheck small and medium icepacks and the socks personally. Ebay and Ubuy are the sites to find the socks, see above.I take an esky with a range of gel icepacks and use most of them by the end of the session. Feel free to contact me directly if you want more info.@Afraser just from reading forums here and overseas, I think that neuropathy from Paclitaxel and Doxacetal is actually a big problem and affects a lot of people permanently or for years, like you, and also that many people lose their nails and have ongoing problems with them, but that its not spoken of as most people are sent off from treatment with the promise it is going to improve and by the time they realise it isn't that isn't recorded.

Anyone tried Cold Therapy to prevent neuropathy in Taxol Chemo

82 Replies

shs14
Member
6 years ago
Great news @Caz1 that they had the gloves at your hospital. I think the chemo that destroys your nails is Paclitaxel anyway so you are killing two birds with one pair of gloves. Brown nails and neuropathy.
So pleased to hear you have the support of the nurses too. Mine were all fantastic and supportive and interested, every week for twelve weeks.
I'm sure you are looking very glam in your ice socks B)
I'm so glad the advice helped. And really glad to hear you are spreading the word! Good luck with it all.
ps. Not sure I want the title of Ice Queen :D Sounds a bit evil!
Caz1
Member
6 years ago
Hi Susie :)
good idea
have been doing my toesies and hands. I’m using my SUPER GLAMOROUS (not) socks from ubuy, they make it so much easier. The nurses suggested using cold gloves they have already in the fridge for some other chemo that destroys your nails apparently. They are like frozen oven gloves and they replace them for me when it warms up, which makes it easier. They are treating me like their little science experiment ;) Whatever!

Thanks for your advice , you are the ‘ice queen’

Caz x
shs14
Member
6 years ago
Was reading the big discussion about Peripheral Neuropathy and so I am bumping this up in case it can help others avoid this side effect when going into Paclitaxel treatment. xx
Caz1
Member
6 years ago
It’s strange @shs14 and @Gavroche some of my nail beds have already gone dark and yucky on the AC! :( But because I’m ever optimistic haha I’ve just painted them a very very dark cherry colour. Look a bit goth... ;)
shs14
Member
6 years ago
No I didn’t @Gavroche I did moisturise with an added drop or two of rosehip oil which was a good tip I got from someone. I think painting and removing nail polish would dry them out more. I didn’t polish at all. The damage seems to occur below the nail bed so I’m not sure it would help.
Gavroche
Member
6 years ago
Dear shs14 - sorry to bug you.

Did you also use dark nail polish and if so, did you regularly remove and repaint?

Cheers,
Caz1
Member
6 years ago
Thank you so much shs14 :) So much great info here. It’s bewildering that even though the neuropathy affects lots of people, there is so little research into what can be done to prevent it.
Especially as Drs will stop the chemo earlier than planned if it gets ‘too bad’. You’d reckon that would be good enough reason to look into it!
You are not being a bore, this is important info to get out there. Well done you!
poodlejules
Member
6 years ago
Great news @shs14. Congrats on your perseverance with the ice regime. I hope one of those docs or nurses does their Masters on the topic!! :) I think it's very beneficial and with little or no cost and excellent results , should be discussed and made available to more patients . Well done xox
Gavroche
Member
6 years ago
Hi again - thanks so much for your prompt and sensible advice.
shs14
Member
6 years ago
Hi @Gavroche,
My pleasure.
I feel a little bit of a bore banging on about it here so much but if it can help others avoid bad neuropathy symptoms and finish treatment I'm happy. One day I think it will be standard care.
I would do the ice bowl method as I've shown above if it were me. After 12 weeks that seemed the best and easiest and also because you can take your hands out briefly if necessary. Helps you to regulate the cold on your hands too.
The thing that I would think socks wouldn't work for is your thumbs. Because they are at an angle to the rest of the fingers its hard to keep them covered both sides.
Good luck with it!
Happy to answer any questions.

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Anyone tried Cold Therapy to prevent neuropathy in Taxol Chemo

82 Replies

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