Icing hands and feet to prevent peripheral neuropathy from carboplatinum, taxol, other meds

zsazsa1
zsazsa1 Member Posts: 568 Member
edited June 2023 in Uterine/Endometrial Cancer #1

Just a reminder to newcomers here that this works. I was in for a completely unrelated treatment last week, and saw a woman beginning chemo who had been offered the scalp icing to save her hair, but had not been offered hand/foot icing, which I think is a terrible shame, since hair grows back quickly, but the pain of peripheral neuropathy is, I have heard, forever. I think the scalp treatment is now a monetized out of pocket add on, but there's no financial incentive to offer hand/foot icing, and it is kind of labor intensive, but so worth it.

I did this during my carboplatin/taxol/trastuzumab chemo for uterine serous/clear cell about 4.5 yrs ago, and I have NO hand neuropathy whatsoever, and only a tiny bit of numbness in the ball of my left foot, I believe because the way I was icing it impeded circulation of the ice water to the sole of the front ball of the left foot.

For those who are about to begin carbo/taxol, know that they both can cause peripheral neuropathy, including numbness, burning sensations, and horrible stabbing pains. What I did was keep my hands and feet in ice water baths, from about 15 minutes before they began the chemo infusion (I had time to get ready, because they give you pretreatment to prevent an allergic reaction and nausea) until the last infusion was over and it was time to go. I had someone there to help with taking off melted water and adding ice, so that the water would stay cold. I used plastic shoeboxes for my feet, and I learned that one should nest the plastic boxes in another box of ice, because when I would fall asleep during the infusion, my feet would rest on the bottom of the shoebox, and be in contact with the relatively warm floor, instead of the ice water.

I had an electric heating pad on my abdomen to keep myself warm, since having my hands and feet in ice water for over 4 hours would have left me shivering, otherwise.

Comments

  • Echogurl
    Echogurl Member Posts: 21 Member
    #2

    At my chemo infusion center patients have ice blocks on hands and feet supplied by staff. This is standard treatment procedure. 2023.

  • Momschooling
    Momschooling Member Posts: 112 Member
    #3
    https://csn.cancer.org/discussion/326625/icing-hands-and-feet-to-prevent-peripheral-neuropathy-from-carboplatinum-taxol-other-meds

    I was prepared to do the icing (I even purchased the gloves and boots) but my cancer center (Dana Farber) says there wasn't enough scientific evidence to support it, so I decided not to try, my neuropathy has mostly gone away except for what I got from surgery. I ended up taking B supplements and this helped. I did do the scalp cooling which I am very thankful for using Paxman, it's not much of a hassle compared to some others like Penguin.

  • Echogurl
    Echogurl Member Posts: 21 Member
    #4

    If it works for hair why wouldn’t it work for fingers and toes?

  • Momschooling
    Momschooling Member Posts: 112 Member
    #5
    https://csn.cancer.org/discussion/comment/1706272#Comment_1706272

    That would be something good to ask the doctors. Hair follicles and neuropathy are 2 different things though, there's not 1 blanket of treatment to cover everything, although it would be nice! There are some cancer centers who are supporting the icing, maybe more will after additional research is done?

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    #6

    I iced when I had chemo in late 2018, Mayo did not encourage me to do so. They reluctantly supplied me with boots and mittens, but did not encourage it. My oncologist said at the time that there were no studies that supported icing as being effective, but some folks ask for it. I believe that there has been a recent study that might be still collecting data to support icing, but I couldn't find it. I can't believe that with all of the information that they collect regarding side effects for every aspect of our treatments that someone couldn't do a retrospective study regarding neuropathy and icing? Maybe they have and we just don't know about it?

    With so many of us icing and having less neuropathy, even if some centers don't support it, what is the harm? My oncologist also said because of very limited funding for cancer that icing is NOT a high priority, finding a cure was the priority. Arrgh!

  • Momschooling
    Momschooling Member Posts: 112 Member
    #7
    https://csn.cancer.org/discussion/comment/1706276#Comment_1706276

    I do hope more studies are done; it is an easy thing to do if it works. I have heard many people say it works but have also seen others who tried and still have awful neuropathy, it is confusing. Scalp cooling also does not work for everyone, so maybe it's similar in the outcome? I took vitamin B and thought it helped, but who really knows.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,505 Member
    #8

    I hope it is presented prior to starting chemo. I was never aware of any of it until I found this site, which I have mentioned before was after I had completed all my treatment. I was fortunate not to suffer neuropathy, and hearing the descriptions from some of the ladies, am trying to imagine those feelings.

    I did have a friend who cool capped her head in an effort to save her hair. She told me she would never do that again, she still lost hair and it was painful for her.

    I guess this reinforces that everyone is difference but there is room for improved communication. There was a time doctors didn't believe in 'chemo brain' either.

  • Mercorby
    Mercorby Member Posts: 113 Member
    #9
    https://csn.cancer.org/discussion/326625/icing-hands-and-feet-to-prevent-peripheral-neuropathy-from-carboplatinum-taxol-other-meds

    I wish I was given that choice, or even told that icing was an option for hands and feet. I ended up with very mild peripheral neuropathy in my feet and hands. I swam after every treatment and several times weekly throughout my treatment. As it turns out, that was the best thing I could have done according to the neurologist who specializes in chemo patients who get neuropathy. Apparently, cardiovascular exercise and particularly swimming is very helpful for this condition.

    I do have scalp pain - tenderness that occurs randomly, in the roots of my hair. It feels like when you take a tight ponytail holder off of your hair and then your hair hurts at the follicles. The neurologist, dermatologist, pcp, and oncs don't know what that is. It doesn't tingle, feel like pins and needles, nor burn. Cold compresses do work. Anybody else have this?

  • Momschooling
    Momschooling Member Posts: 112 Member
    #10
    https://csn.cancer.org/discussion/comment/1706314#Comment_1706314

    I do have weird scalp sensations occasionally, especially right after the last treatment. It might be inflamed hair follicles.

  • Momschooling
    Momschooling Member Posts: 112 Member
    edited June 2023 #11
    https://csn.cancer.org/discussion/comment/1706302#Comment_1706302

    Scalp cooling is really variable depending on type of chemo and even then it's at best a 70 percent chance of saving 50 percent of hair. I didn't find it painful, but I was also totally drugged out on Benadryl lol. It's still traumatic losing half your hair, I was prepared for it not working at one point, then the shedding slowed down. BTW no one openly offered me scalp cooling, I had seen it online and asked.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,505 Member
    #12
    https://csn.cancer.org/discussion/comment/1706318#Comment_1706318

    I remember even after treatment feeling that as well. For me it felt like someone was pulling on my hair and I would just press my scalp. That lasted for sometime but eventually went away.

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