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

Deanne
Member
6 years ago
Hello @shs14,
I had FEC followed by Docetaxel at 3 weekly intervals, 6 years ago. The hospital supplied ice gloves for use during the Docetaxel chemos. I had no issues with neuropathy and also believe it prevented nail damage. Once when the cannula was put into a vein on the back of my hand the nurse used an ice pack for that hand. The thumb was not covered well and that was the only nail that discoloured during my chemo.

So, from my experience ice packs can work but are not as easy to ensure even coverage with. It was just a standard ice gel pack that was used by the nurse but the gloves were easier. I needed someone to help me access a drink etc while my hands were out of action during chemo though.

Best of luck with it. Take care. Deanne xxx
shs14
Member
6 years ago
Hi @Deanne,
Thanks for sharing your experience x
That's great that you were offered gloves. I'm going to ask at my hospital this week.
I think I will make the investment if they don't have them. Maybe I can sell them on afterwards.
I'm most worried about permanent neuropathy rather than nail damage as I make art and craft with my hands.
Did you just have one set of gloves? People talk about starting 15 minutes before transfusion (I think my dose will be an hour) and changing gloves after 45 minutes and keeping them iced for 15 minutes after.
Oh and did you do anything for your feet or were they okay?
Susie

For anyone who is interested, this is the research info:
https://academic.oup.com/jnci/article/4443215/Effects-of-Cryotherapy-on-Objective-and-Subjective
poodlejules
Member
6 years ago
Hi @shs14. Like you I had heard about the Taxol / neuropathy link and thought I'd research it and try anything as my sister ended up with it in her feet after bc treatment. I didn't need A/C only Taxol and Herceptin , at Peter Mac Melbourne. I looked for gloves online but they were sold out so I just made do with the the ice from Peter Mac's ice machines in their kitchens on the chemo ward. The staff were very helpful and some slightly amused but they let me try it. I have no neuropathy and didn't experience any nail loss only a tiny bit of tingling in one little finger. My nails were weakened but 2 years later are as strong as ever.
I bought a new round cake container from the Reject shop to fit my size 7 feet (tied up in plastic bags) and rested it on a small lunch esky (my legs wouldn't have reached the container otherwise !) where I housed some ice packs in case the machines broke down. It did happen on my very last session and my helper went down to the next floor with a nurse and got some ice from there for me as I was determined to finish it off with the ice!
For my hands I used the hospital's sterile gloves and a wide mixing bowl from home.
I had someone to help at each session and started the ice plunge as soon as the line went in.
It was cold and tough for about the first 15 minutes and then it eased off.
I was as committed as the cold cap ladies are and determined to give it a go. My helper would chat to me and get me a warm drink once I'd finished .
I just wish I took some photos but that was the last thing on my mind at the time.
The only other thing to note is the vein access.
I had a good vein in the crease of my elbow which was used frequently and held up well, but some chemo nurses prefer the ones in the hand or the wrist . I would just explain what I was up to and they'd try further up.
Good luck with your next lot of treatment. It all seems like a bad dream now for me , I can't believe I got through it , and you will too . All the best, J x
shs14
Member
6 years ago
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
poodlejules
Member
6 years ago
You're welcome Susie, glad I could help.
Apparently it used to happen at Peter Mac , they had some mitts in the old hospital, but it was a service that wasn't used so they stopped offering it. They have a lot of cold cap machines there too but I only ever saw 2 women using them over my time there.
I wouldn't have been able to do both , and was told my hair would fall out so chose to use the ice on my hands and feet.
Please feel free to message me if you need any more info. :)
Sabbra
Member
6 years ago
Great info ladies, I have ordered gloves and socks from a site called ubuy, about $240 that’s for the items postage and taxes
shs14
Member
6 years ago
Hi @Sabbra
That'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
Sabbra
Member
6 years ago
@shs14 Susie, I start ac on Monday dense dose, I’m triple neg, had my ops first now for the onslaught, I have the coloxyl at the ready. Lol cheers Maxi
kmakm
Member
6 years ago
Best of luck @Sabbra. A few women in my support group have just finished dose dense AC. They all had different responses. I hope yours treats you kindly. Best of luck, K xox
shs14
Member
6 years ago
@Sabbra Maxi I will be thinking of you and hoping you have a good run with it. AS @kmakm says we are all different. It's good to get started because the anticipation is often the most stressful part. I had my op first too and mine was dense dose.
Losing your hair is a big deal and made me quite emotional, but a few weeks on and I'm okay with it. I did a Look Good Feel Better day and that was nice.
I have been doing lots of walking everyday too, I'm strict with it, and I credit that for relatively minimal side effects, make sure you get good sleep too and rest. And the coloxyl :D