Hi Liz. I know that it is 8 months since you posted your question and I hope that you are well. Can you tell me please who advised you about the freezer gloves and socks? No one told me about these before my chemo and the resulting peripheral neuropathy has ruined my life. I only learned about them from the support group that I joined but that was far too late to be of help. They should be standard issue by the NHS or, at least, we should be asdvised to get them privately.

Hello jukebox frankie, I'm really well, thank you for asking. Nearly four months post chemo and returning to work soon albeit with a rather funky hairdo!

I'm really sorry this has happened to you, has your oncologist suggested anything to help?  They are your best person to ask and to monitor and advise you.

No medical personnel told me about the cold gloves and socks, I think I just read as much as I could about chemo treatment and things that could make it more tolerable. I realised quite early on that support groups/sites like these are much more knowledgeable that any BC nurse I've come across, the nurses are very kind but I think they can't  recommend some things in case it comes back and bites them on the behind, as what works for one person may not work for another. I took the stance of throwing everything  I could at my treatment and hoped for the best.

I have to say I wore the socks/gloves religiously to each session and I didn't suffer any neuropathy.  Like you the nurses claimed not to know about them but I'm not sure I believed them as I couldn't be the only one who's tried it.  I decided against polybalm as it was expensive but wore nail ridge No 7 protection and I didn't suffer any lost nails or discolouration.

take care and feel free to message me, I lurk a lot x

Hi Liz. Many thanks for replying so promptly and I am so pleased to hear that you are well.

My surgery was successful, I now have no tumours or irregularities, but the chemo was a nightmare and the resulting neuropathy continues to be a major issue. The oncologist discussed the ice skull pack before the chemo but advised (correctly) that the drugs that I would be on did not cause hair loss. No mention was made of neuropathy but the drug used on me is the major cause of CIPD (chemo induced peripheral neuropathy). Between months 6 and 12 after the chemo, a number of things were tried but then the direction turned towards pain management. Most drugs that are used, such as duloxetine, were first designed as anti-depressants. They stop the messages to the brain but can equally stop the pain messages from the feet and hands. But even duloxetine, which is the most successful with CIPD sufferers, only helps less than 10% of folk and turned me (and others in the support group) into zombies. Just like being in a fog. I had to be taken off it. 

I have tried compression socks, Acupuncture, Thai Foot Massage, TENS (electric stimulation), Vibrating massage plates but all to no avail. Reflexology gives short term respite but it is short term, hours not days.

You did really well to find out about the socks and gloves before hand. Because of the surgery, I was not expecting to need the chemo and I was still in hospital when I was told that chemo would be recommended. So, little time to gather information. 

It seems that the gloves and socks are more routinely used in the US, hence my original question to you to see if you had been advised of them by the Cancer Clinic.

Thank you for listening.

Frank

Hi Liz. Many thanks for replying so promptly and I am so pleased to hear that you are well.

My surgery was successful, I now have no tumours or irregularities, but the chemo was a nightmare and the resulting neuropathy continues to be a major issue. The oncologist discussed the ice skull pack before the chemo but advised (correctly) that the drugs that I would be on did not cause hair loss. No mention was made of neuropathy but the drug used on me is the major cause of CIPD (chemo induced peripheral neuropathy). Between months 6 and 12 after the chemo, a number of things were tried but then the direction turned towards pain management. Most drugs that are used, such as duloxetine, were first designed as anti-depressants. They stop the messages to the brain but can equally stop the pain messages from the feet and hands. But even duloxetine, which is the most successful with CIPD sufferers, only helps less than 10% of folk and turned me (and others in the support group) into zombies. Just like being in a fog. I had to be taken off it. 

I have tried compression socks, Acupuncture, Thai Foot Massage, TENS (electric stimulation), Vibrating massage plates but all to no avail. Reflexology gives short term respite but it is short term, hours not days.

You did really well to find out about the socks and gloves before hand. Because of the surgery, I was not expecting to need the chemo and I was still in hospital when I was told that chemo would be recommended. So, little time to gather information. 

It seems that the gloves and socks are more routinely used in the US, hence my original question to you to see if you had been advised of them by the Cancer Clinic.

Thank you for listening.

Frank

That's why this forum is so great, always someone to listen to you Frank. It sounds as though you have really suffered badly and I'm truly sorry. I can only speak from my experience, this was my second time around with cancer but first time having chemo, I think that I was in such a panic/shock I literally spent hours on the internet researching what to expect but I had the luxury of time.  

I don't understand why, as cold capping is routinely offered, why ice gloves/socks are not seen in the same light.

Yes, the US seem to be more open to their use and we can only hope that forums like these can prevent someone having the same issues that you are suffering from.

I was told that the EC part of my chemo would not result in neuropathy but the Paclitaxol treatment could, I didn't risk it and wore the gloves/socks for both parts of my treatment. 

I really hope that you and your doctor can find some relief for your pain, it's terrible what this disease does, especially when once you're deemed 'cancer free' you are expected to jump back into your previous life. It's so cruel, I'm never going to be the same person I once was (physically and mentally) and find it ridiculous people expect me to be my normal happy self.

We are allowed to grieve the life we had.

I'm not cancer free, I'm at a wait and watch stage but to all others it's over...not in my blinking head it's not!

take care, Liz

Hi Liz. I am saddened to hear that this is your second episode of cancer. I hope that your road to recovery is short and straight.

You will have gathered that I am a newbie to these forums on Cancer Research UK. You might be interested to hear how I found your particular thread. As I said earlier, all my online research was done after the event because of the timing. I have found Microsoft’s Copilot to be particularly useful as you can have a “conversation” with the AI robot. Yesterday I asked whether the ice gloves and socks were available in the UK to lessen the effects of PN.  After answering my question, the robot offered me a link to get further information and that link was to your opening question on this thread. So, you are considered to be the authority on the subject by AI. Fame!

Thanks again for listening.

Frank

Yes David, I do have rather a stubborn streak along with the ability to wear down the most stern oncologist with my many many questions! I find the journey is helped being smoothed with a lovely rose or two...onwards and upwards

Rather pleased my initial question on here has led you here Frank, I'm just sorry that it wasn't discovered sooner for you. Let's hope someone out there may benefit from it and not have to go through your trauma

take care Liz

Good for you Liz, l have the same outlook and am ten years on from a stage 4 diagnosis, who needs fairground rides when you have this,

Still have neuropathy of the feet but at least my command centre has given up on the hopeless task of reminding me until l relax and come to bed.

l have also mastered the knack of not continually throwing myself to the ground. Do l enjoy an active interesting life--you betcha

Enjoy those roses, they were my mums favourites

David

Hi Liz,

I start my chemo in a week and was looking into cold gloves and socks,I have a brand in mind but wanted to ask if you found you needed extra gel packs to maintain the cooling during your sessions?

thank you

Hi Misha. You make sure that you use the cold gloves and socks. I was not told about these until the chemo was done and have suffered with peripheral neuropathy in my feet and hands ever since. Hopefully Liz will get back to you with advice about extra packs. My infusion sessions lasted over 2 hours each. The manufacturer may be able to tell you for how long the cooling gels will remain effective. Wishing you well for the chemo. - Frank

thanks Frank,

I managed to find a set and have taken the plunge and bought some and have got a second set to have spare gels.

this forum is fantastic for finding out these vital facts and I am so glad you replied

Hello, sorry haven't had chance to reply sooner. Thanks for replying Frank, hope you're doing well and enjoying this beautiful sunshine, has it had a positive effect on your neuropathy at all? 

Hello Misha x The brand I had was Suzi Pads from Amazon. Yes Misha I had a spare pair of socks and gel inserts. I bought a picnic bag from Amazon too and used  normal freezer packs in between the socks in the bag to keep them frozen as my chemo tended to last from 3 hours to 4 at a time. They do unfreeze but better than nothing and I didn't want to buy another set as it's expensive this cancer malarkey.

I'd recommend putting the socks/gel inserts together before you get to the chemo unit and take a blanket to put over your legs. Sounds weird but my legs were cold even in the summer as my feet were frozen (obviously) DO NOT attempt to go to the loo wearing them though, make sure you go beforehand and wear something without a zip in case you do need to go as it's difficult with a canula in your hand and the chemo unit attached.  I also used the hand freezer packs, used shea butter hand cream from Boots about 20 times a day (really cheap one but brilliant) and kept my nails very short, I didn't lose any nails, slight discoloration though. I only painted them with Boots ridge filler and didn't take it off, I just painted over it when it got a bit flakey, gross but it worked for me.

You might need to breathe through the first few minutes of cold as it is a little painful but I'm glad I persevered. I do wish I'd tried the cold cap too but I'm not sure if I could have survived a frozen head, hands and feet hahahaha 

I used the socks and gloves for every chemo, 3 EC and 9 Paclitaxol, I wasn't sure which one would potentially cause neuropathy so thought it couldn't hurt to just do it for  all sessions. 

It's been 8 months since my last chemo and I'm happy to say it does become a distant memory, I know it's all consuming at the time but it will pass and you will get through it. You'll have good days and bad days so just sleep on the bad days and get out in the sunshine on the good days, saying that I felt better for going for a walk even when I just wanted to sleep my day away. 

I am here if you need anything or any questions. Good luck for next week, ask the nurses all the questions you want and if they don't know just ask on here, someone will have the answer. You've got this x

thanks for the reply Lizjon, I went for the Suzzi one too. Im not sure what treatment I'll be getting but I figured it wont do any harm if I do wear them.

thanks for the tips too I will definatley take the blanket and try to use the loo before it all starts.

I hope you are all ok now and thanks again for replying

so I started my chemo yesterday and was advised against using the cold pack as they could worsen the neuropathy ( Im on a FLOT program )

Fingers crossed it goes ok