Icing

I did the icing using the elastogel slippers and mitts.

The advantage of this method is that it's a lot neater to do than Zza Zza's method, but it's a lot more expensive. You need to start icing at least 20 minutes before the chemo drugs are started and for 20 minutes after they are done, so I needed 4 pairs of slippers and 4 pairs of mittens in a big cooler of ice (on wheels really helps for transport) to get through each session. $800, but worth every penny. Each pair would stay cold enough for about 45 minutes of use.  I hadn't heard about icing until I was in the throws of neuropathy from my first infusion and looking for relief in a hurry before the next. I don't think there was anything on this board about doing it when I first came here, so I didn't care what it cost because I was in so much pain from the first infusion.

On a side note, I also took gallon ziplock bags and hand towels and used some of my ice to keep a bag of ice on my head. It just felt good to me (I'm used to doing this for migraines that I get) and I think it had the added benefit of me keeping peach fuzz on my head through most of treatment. It was enough to protect my head from some of the scalp irritation that others had issues with.

Besides Zza Zza's method and mine, I think ArmyWife had a great method that was neater, cheaper, and perhaps as manageable as mine was. The big advantage of the slippers came when I needed to use the bathroom (which is a given when an IV is running into you)....I could walk there in the slippers using surgical booties to keep them clean.

You probably know the following since this isn't your first trip to the rodeo, but just in case a reminder is in order:

Besides the icing, it's important to start taking Vitamin B12 because you are likely deficient from the cancer, and other things converting active B12 into it's inactive form. B12 is important for nerve function. B6 and Folate are important, too, but be careful not to take the megadoses that they come in as supplements because those have upper tolerable limits and can actually contribute to neuropathy if you take too much of them.

Hold off on anti-oxidant/anti-cancer supplements you may be taking during chemo/radiation. You don't want to suppress cancer cells now because treatment targets active cells.

Remember to also drink at least 2-3 quarts of water daily throughout chemo. It's critical for flushing the chemo drugs out of your system after infusions and for preventing constipation like you've never experienced before. That can't be emphasized enough. Ask your doctor or chemo nurses if they want you on any kind of a bowel regimen, like taking Miralax preventively, too.

Pack a lunch or snack to take with you. They want you to eat and drink during chemo. The infusions are timed for when cancer cells are at their most active, so this is a time when feeding them can be a helpful thing. 

Good luck to you!

els19 said:

Thank you! I love all your

Thank you! I love all your suggestions. Did you wear socks or gloves? I've read some people couldn't stand the cold without a barrier. 

I originally started out with just surgical booties over my bare feet as the instructions suggested, but wearing socks was a bit easier and my feet got cold enough. I had no problem with the mitts, so I did not wear gloves. The cold on your feet is the hardest to bear for the first 10 minutes or so, but if you can make yourself get through that it gets easier. I used the slippers to deal with the neuropathy pain at night, too, so I feel like I really got my money's worth out of them. 

Els, I’m so sorry you had a recurrence. 

I used the Elastogel mitts and booties (a different brand since I don't think Elastogel makes booties), and I had a lot of neuropathy despite that – in my feet, like you. I wish I'd known then about direct icing. I agree with ZsaZsa that the mitts and booties likely do not get cold enough. I think in the studies the mitts were frozen to a much lower temperature than can be achieved in a regular refrigerator. Plus, the mitts need to be changed frequently, which requires a lot of vigilance, and also is quite expensive, as you know since you’ve ordered yours. If I remember correctly, I needed 14 mitts to allow for using them from 20 minutes before the infusions started until 20 minutes after they ended. Last October when I needed them, I had a really hard time finding enough and had to order from several sources on Amazon. One shipment was delayed, and I was frantic trying to locate replacements for the ones that didn't arrive in time. Since you’ve already ordered yours, you won’t have that problem. 

I had intended to donate my mitts and booties to a local nonprofit organization, but once I learned about direct icing (which is what they use at Memorial Sloan Kettering) I decided it wouldn’t be helpful to encourage mitt/bootie use rather than icing if someone had not already decided.  But they seemed too expensive to throw away. I hate having them in the house, though, so what to do with them is a dilemma. If you hadn’t already ordered yours, I would have loved to give mine to you. If anyone reading this has also made the choice to use mitts/booties and would like mine, just let me know.

Warm best wishes, Els, for a good treatment experience and a happy outcome. 

Molly110 said:

Primavera, I see that the notice is dated 2017, and I bought mine in October of 2019, so I think they are no longer recalled. My guess is that the company had been marketing them with chemotherapy as a use and didn't have FDA approval for that. I know when I bought them last fall there was no mention of chemotherapy in the marketing materials or instructions. (I think of myself as a pretty competent researcher when it comes to stuff I buy -- especially health stuff -- but I never looked the mitts up!)

Take care,

Molly

My boyfriend just called me and said he found the last 3 somewhere. That's the mittens only. His niece is a radiologist and her husband is a sports medicine doctor. They said "not everyone develops neuropathy" lol...and I said I don't want to find out I'm in the list of the ones who develop it.

I don't care about recalls. I guess two people got frostbite? I know they have worked for other people and I would use them. But I can't find the booties at all.

Places that sold both the mittens and the booties said that the manufacturer has stopped sending them to their store.

Thank you, Molly.

els19 said:

Is there some safe way I

Is there some safe way I could contact you? I haven't bought enough mitts and booties for the entire time. Perhaps I could purchase yours.

They get sent an email.

Do you know how long infusions are? This is all new to me. I had uterine cancer last year and didn't get chemo. I have breast cancer now.

Tamlen said:

Icing prevented neuropathy for me

Els19, I'm sorry you've got to go through this. It sounds like you're being thoughtful about the groundwork that will help you be as healthy as you can be through it all.

I iced both hands and feet during chemo and managed to avoid all neuropathy -- I thank the icing for that. I began icing at arrival at my chair at the infusion center, which was about 30 minutes before infusion began, and continued for 30 minutes after infusion ended. I tooks brief icing breaks to eat, use the restroom, and take walks around the infusion suite to stretch my legs. Sometimes I had to give my toes a break too, as they got too cold each time.

As others have pointed out, the ElastoGel mitts don't stay cold enough for very long -- about 40 minutes for me. They also don't re-freeze very quickly. We'd put them in our freezer 24 hours before infusion to make sure they were as cold as we could get them. We bought a portable freezer on wheels (about the size of a cooler) that I could plug in next to my chair and I had 6 pairs of the mitts to rotate through. We also kept that freezer plugged in inside the car (using the car's plug outlet) to make sure the mitts had no chance to warm up on the 1-hour drive to the infusion center. The most recent pair went to the bottom of the little freezer each time I switched pairs, to help them get colder faster. By round two of each mitt they were never quite cold enough. If I ever have to have chemo again, I might opt for a bowl of ice and ice water in place of the mitts.

The NatraCure Cold Therapy Socks I bought on amazon stayed VERY cold, even too cold sometimes. I found that even putting on a thin pair of sock first wasn't enough to keep my two smallest toes safe. I found it worked to wrap each in bandaids and give my feet a break of about 5-10 minutes whenever I couldn't stand the pain in those toes anymore.

It was an expensive arrangement but to my mind, worth every cent. Good luck!

I'll order the Natracure cold therapy socks with a few inserts.

I never thought of mini freezers. I just had to find the smallest one with the better reviews and not a price tag of more than $500. Not that I think it's not worth it, but I don't want to have an expensive little freezer after I'm done with this.

I think I found one. I wanted the smallest one I could get. I hope it works. Alpicool C15. But I'll keep on checking for a day or two.

I think I have 5 pair of top and bottom Nature Cure inserts for the booties, and that was barely enough, but I didn't have a portable freezer. I wish I'd known that such a thing exists, as I may have had less neuropathy had my mitts and booties been colder. I froze them in advance and then put them in two separate ice chests which I took with me. I didn't reuse them during a session, as I had no way to re-cool them.

Remembering that not every one gets neuropathy, it's hard to know why some people get it and some don't, but you may want to ask your doctor about taking breaks during which you don't have the mitts and booties on. I kept mine on even to walk to the bathroom and use the toliet. It was easy to walk on the booties, and my wonderful chemo nurse walked the IV stand into the bathroom with me. I then took off only one mitt for the few seconds it took to wipe and wash my hands. Yet I had significant neuropathy and still have a lot in my feet. I may be unusually senstive to the nerve damage these kinds of chemo can cause. If I'd known then what I know now, I also would have started acupuncture at least a week before chemo with an acupuncturist experienced with treating people in chemo specifically to prevent neuropathy. Had my gyn/oncologost and nurse practitioner not recommended acupuntcure to me after my first chemo, I would likely have dropped out of chemo. It think it is outrageous that most insurance does not cover acupuncture for people in chemo, which puts it out of reach for most of us.

I also, on the advice of my nurse practitioner, took alpha lipoic acid and a B vitamin throughout chemo, as well as some other supplements she approved in an effort to prevent or mitigate nerve damage. She was clear that the evidence is not strong for much of what I tried, with a few exceptions, but I tried everything she said was safe to try. I've just ordered glutamine powder on the recommendation of a woman who posted about it in a recent thread. 

Of course, everyone is different, and many people don't develop neuropathy and didn't ice or do anything else in an effort to prevent it. My sister in law had many, many months of taxol -- much more than I had -- for a different kind of cancer, and she never had a moment of neuropathy, although she didn't ice or do other preventive things.

It would be so much easier if there were a way to predict who will and won't get neuropathy.