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

Mazbeth
Member
6 years ago
Thanks so much @shs14 I have completed 2 of my 12 taxol treatments and I am merrily using all of your tips on cold therapy for my hands and feet. I have used the links to buy what I needed from overseas but I find ice cubes in a bowl for my hands are the easiest as I can bury my fingers. I just top up the bowl as the ice melts. It just means being a little more organised for my treatment, but the nurses are great and let me know what time I will start so I can ‘ice up’ for 15 minutes before. I would have known about all of this because of this forum and I am up for giving anything a go. I will keep you posted about how it all goes, but for anyone wondering how they can manage it I would say give it a try - you can easily just use ice cubes in a bowl.
When we arrive with my esky - I just tell everyone we will be making margaritas in cubicle 6! You gotta find a bright side in all of this!!!
Thank you again - as someone who is new to this, I cannot tell you enough how much I appreciate the help and support I have received here.
shs14
Member
6 years ago
Bumping this again for any new people starting Paclitaxel treatment :)
shs14
Member
6 years ago
Hi @jintie, that’s great your symptoms were slight and cleared up. You are one of the lucky ones.

For some people more severe Peripheral Neuropathy symptoms mean they stop treatment and don’t finish the full course. It compromises their treatment.

From what I can tell it’s a bit of a lottery, like many other chemo symptoms.

According to a study online 90% of patients having Taxane chemotherapy develop neuropathy symptoms.

You just have to read the forums here and overseas to see that for some people their Neuropathy is more severe, interferes with their life, gives them pain and discomfort and can last for many years.

My only aim is to give people the information so they can choose whether to use it or not.
jintie
Member
6 years ago
That’s great that it worked for you. Just wanted to let others know that I had Paclitaxel and chose not do cold therapy... and whilst I had a little bit of PN at the end of chemo, it resolved within a few weeks of finishing treatment and I kept all my nails.
shs14
Member
6 years ago
I see there are a bunch of new people round here, welcome everyone, so I'm bumping this one again.
I made a submission today to all my treating doctors and the Day Therapy unit at my hospital to make information and facilities for Cold Therapy standard for people starting Paclitaxel. Fingers crossed it helps get the word out!
Caz1
Member
6 years ago
@shs14 they sure are. I’m going to miss them. They make the unbearable bearable..
They all got big hugs from me <3
shs14
Member
6 years ago
Thank you so much @Caz1 for sharing your positive experience and getting the message out.
I'm so pleased to hear you have minimal neuropathy out the other side!! I hope the symptoms you do have in your feet fade away soon. The slight residual numbness I had in my fingertips at the end of chemo has been slowly going. Its funny some days it flares up but mostly I don't notice it.
And great to hear your nurses helped you through. Chemotherapy nurses are a special breed aren't they! :)
Caz1
Member
6 years ago
Hi And happy new year Susie! I finished chemo on Monday yay!!!!!!! Still can’t believe it :)

Followed your advice on the cold gloves and Sox right to the end.....and I have a good result.
Absolute minimal tingling on my feet after 3 months of paclitaxol. It was a pain to manoeuvre at times, but I had supportive nurses which helped, especially when I was over it.

This thread was brilliant. Thanks to everyone else who contributed too :*
Get the message out there gurrrlz!
shs14
Member
6 years ago
For everyone starting Paclitaxel this year. Worth a read.
shs14
Member
6 years ago
It seems like lots of new people around here so I'm bumping this thread again in case anyone is considering Cold Therapy to help minimise or avoid Peripheral Neuropathy and nail loss in Paclitaxel or Doxacetal chemotherapy. If you read back through the post there are links to studies and to other US and UK forums where Cold Therapy has become a standard consideration for most going through chemotherapy. There is also the Japanese trial showing positive results using this idea.

Forum Discussion

Anyone tried Cold Therapy to prevent neuropathy in Taxol Chemo

82 Replies

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