Hand and foot syndrome… anyone experience that?

Posted by myjiggers1 @myjiggers1, Dec 22, 2023

Hi guys! Merry Christmas!🎁 I have 5 more treatments to go and now have hand/foot syndrome. Yayyyy! What are your experiences with this? My hands have started peeling and I have massive callouses on my feet now. I hate the feel of the working hands and feet creams and ordered udderly smooth. Hands get the tingling and burning swollen feeling and my feet as well for a couple days after treatment. Oncologist said it will get worse. I am wondering how worse with 5 weeks to go could it get for me and if I can prevent it? She hasn’t lowered my dosage. I don’t know if she will or not. The visiting nurse thought they might. Hanging in there though! Over the hump…

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Good morning @myjiggers1, You have my empathy with hand and foot syndrome. It’s painful and really interferes with your entire sense of well-being. I hope your doctor might consider lowering your dosage but that can also make the treatment less effective. So that’s a tough call.

There are a few things I learned along the way to help ease the disruption when the chemo dosage couldn’t be lowered.
Finding moisturizers without alcohol is important. I finally settled on Burt’s Bees Baby Balm or products from VaniCream helped the most. The skin on my arms and flank also took a hit from chemo and the heavy antibiotics I was taking at the same time. So those moisturizers helped keep things calm, along with a prescription cortisone cream to reduce the inflammation when needed.

Protect your skin from heat such as hot baths, sun exposure or hot water for washing dishes, etc.. I used to place my hands on the granite countertops for a quick fix. Another short term relief was wetting washcloths in cold water, wring them out, then wrap my hands and feet in the cool washcloths. If you can, have someone else wring them out to avoid aggravating your hands. Once they’re wrung out, you can just shake them again to cool the cloth off to reapply.

Try not to rub your skin. Pat your skin gently when applying lotion or using a towel. Wear light, loose-fitting socks and shoes. What felt the best for me were the fuzzy slipper/grip socks that are given in hospitals. (Drug stores and Amazon have them) Elevate your hands and feet when you can.
My daughter also brought me a pair of light cotton gloves that I could wear for holding things like kitchen knives or sweeping. Otherwise the friction would really make my hand burn for longer after an activity.

I hope you find some relief. This does pass but it feels like forever when you’re going through it. I wonder if ice packs on your feet and hands during the chemo infusion might help?
Do the best you can to enjoy a lovely holiday season and best wishes for a healthy New Year ahead! ☺️

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@loribmt

Good morning @myjiggers1, You have my empathy with hand and foot syndrome. It’s painful and really interferes with your entire sense of well-being. I hope your doctor might consider lowering your dosage but that can also make the treatment less effective. So that’s a tough call.

There are a few things I learned along the way to help ease the disruption when the chemo dosage couldn’t be lowered.
Finding moisturizers without alcohol is important. I finally settled on Burt’s Bees Baby Balm or products from VaniCream helped the most. The skin on my arms and flank also took a hit from chemo and the heavy antibiotics I was taking at the same time. So those moisturizers helped keep things calm, along with a prescription cortisone cream to reduce the inflammation when needed.

Protect your skin from heat such as hot baths, sun exposure or hot water for washing dishes, etc.. I used to place my hands on the granite countertops for a quick fix. Another short term relief was wetting washcloths in cold water, wring them out, then wrap my hands and feet in the cool washcloths. If you can, have someone else wring them out to avoid aggravating your hands. Once they’re wrung out, you can just shake them again to cool the cloth off to reapply.

Try not to rub your skin. Pat your skin gently when applying lotion or using a towel. Wear light, loose-fitting socks and shoes. What felt the best for me were the fuzzy slipper/grip socks that are given in hospitals. (Drug stores and Amazon have them) Elevate your hands and feet when you can.
My daughter also brought me a pair of light cotton gloves that I could wear for holding things like kitchen knives or sweeping. Otherwise the friction would really make my hand burn for longer after an activity.

I hope you find some relief. This does pass but it feels like forever when you’re going through it. I wonder if ice packs on your feet and hands during the chemo infusion might help?
Do the best you can to enjoy a lovely holiday season and best wishes for a healthy New Year ahead! ☺️

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Thank you so much for the information! I am so nervous about it! I will try the ice and buy gloves! And if the udderly stuff doesn’t work I will get burts bees! 🐝. I did notice that turning water bottle caps hurts so I have to use a cloth or my shirt to get it going! Wish me luck! Merry Christmas!

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@myjiggers1

Thank you so much for the information! I am so nervous about it! I will try the ice and buy gloves! And if the udderly stuff doesn’t work I will get burts bees! 🐝. I did notice that turning water bottle caps hurts so I have to use a cloth or my shirt to get it going! Wish me luck! Merry Christmas!

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I’ve been reading through some of your previous posts. Good grief, you’ve already been through the wringer with all these chemo treatments. I’m sorry you’re having this hand and foot reaction as well. It’s miserable but it does eventually go away…just feels like forever at the time!

You’re on the right track with using a shirt or cloth to open bottle caps. It’s little tricks like that which can help make some differences with the daily annoyances. It also works to get you out of a lot of house work. ☺️
Joking aside, don’t hesitate to ask people for help! This is the time when it can actually be “all about you” and what you need to make your life easier right now. I’m fiercely independent and it felt so demoralizing asking for assistance. But once I got used to it, I had no issue with setting a jar in front of my husband and batting my eyelids…sans lashes. LOL. I’m almost 5 years post treatment, cancer free and strong as ever. But I still ask for help sometimes. I learned from that experience. 🙃

The hand and foot syndrome is no laughing matter though because it is so painful and interferes with trying to gain some normalcy in your life during all of this cancer adventure. You bet I wish you good luck through your treatments! Sending you positive vibes of courage and intestinal fortitude to push through this! Let me know how you’re doing along the way, ok? Hugs

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Gosh I wasn’t aware adults got hand and foot - my granddaughter had it! It sounds dreadful for immunosupressed. Any idea how you contracted it?

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@pb50

Gosh I wasn’t aware adults got hand and foot - my granddaughter had it! It sounds dreadful for immunosupressed. Any idea how you contracted it?

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Hi @pb50, Hand-foot syndrome (HFS) is a common skin reaction to systemic chemotherapy. I think your daughter may have contracted Hand, Foot and Mouth Disease which is pretty common with children. The names sound the similar but one is communicable where the syndrome related to chemo is pretty specific. I hope your granddaughter recovered quickly.

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@pb50

Gosh I wasn’t aware adults got hand and foot - my granddaughter had it! It sounds dreadful for immunosupressed. Any idea how you contracted it?

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It is chemo induced. Not the same as hand foot and mouth! That’s probably what you’re thinking! This is hmmm burning hands and feet with peeling skin and tingly hands and feet. Blisters are possible and of course can lead to infection! Happy happy joy joy lol I took a picture of my hands in the second round of chemo induced stuff. I have been on it for 7 rounds and have 5 to go. I hope it doesn’t get much worse.

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@loribmt

I’ve been reading through some of your previous posts. Good grief, you’ve already been through the wringer with all these chemo treatments. I’m sorry you’re having this hand and foot reaction as well. It’s miserable but it does eventually go away…just feels like forever at the time!

You’re on the right track with using a shirt or cloth to open bottle caps. It’s little tricks like that which can help make some differences with the daily annoyances. It also works to get you out of a lot of house work. ☺️
Joking aside, don’t hesitate to ask people for help! This is the time when it can actually be “all about you” and what you need to make your life easier right now. I’m fiercely independent and it felt so demoralizing asking for assistance. But once I got used to it, I had no issue with setting a jar in front of my husband and batting my eyelids…sans lashes. LOL. I’m almost 5 years post treatment, cancer free and strong as ever. But I still ask for help sometimes. I learned from that experience. 🙃

The hand and foot syndrome is no laughing matter though because it is so painful and interferes with trying to gain some normalcy in your life during all of this cancer adventure. You bet I wish you good luck through your treatments! Sending you positive vibes of courage and intestinal fortitude to push through this! Let me know how you’re doing along the way, ok? Hugs

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Thanks Lori! 5 years! Thats awesome!!!! You are in the zone! May I ask what your stage was? My biggest worry isn’t me. I am a single mom with my son 16 who is on the spectrum and college bound I pray! But if I can’t stick around to keep shoving him towards his dreams no one will. I don’t trust my ex to know what to do or to care. So 5 years would be amazing… I would like 20 but I won’t be greedy. God has been holding me up and I pray His plan includes this momma being around for a bit longer. I read that right side colon cancer is less responsive to chemo, so I pray they got all of it out and in time before those dang nodes dispersed any more cancer into my body. I know its a waiting game. How did you fair thru the waiting?

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@myjiggers1

Thanks Lori! 5 years! Thats awesome!!!! You are in the zone! May I ask what your stage was? My biggest worry isn’t me. I am a single mom with my son 16 who is on the spectrum and college bound I pray! But if I can’t stick around to keep shoving him towards his dreams no one will. I don’t trust my ex to know what to do or to care. So 5 years would be amazing… I would like 20 but I won’t be greedy. God has been holding me up and I pray His plan includes this momma being around for a bit longer. I read that right side colon cancer is less responsive to chemo, so I pray they got all of it out and in time before those dang nodes dispersed any more cancer into my body. I know its a waiting game. How did you fair thru the waiting?

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@myjiggers1, you may also be interested in this related discussion in the Cancer: Managing Symptoms support group:
- Hand and Foot Syndrome - any suggestions?
https://connect.mayoclinic.org/discussion/handfoot-syndrome-any-suggestions/

REPLY
@loribmt

Hi @pb50, Hand-foot syndrome (HFS) is a common skin reaction to systemic chemotherapy. I think your daughter may have contracted Hand, Foot and Mouth Disease which is pretty common with children. The names sound the similar but one is communicable where the syndrome related to chemo is pretty specific. I hope your granddaughter recovered quickly.

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Ah. Well now that makes more sense! Thanks for that clarity.

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@myjiggers1

Thanks Lori! 5 years! Thats awesome!!!! You are in the zone! May I ask what your stage was? My biggest worry isn’t me. I am a single mom with my son 16 who is on the spectrum and college bound I pray! But if I can’t stick around to keep shoving him towards his dreams no one will. I don’t trust my ex to know what to do or to care. So 5 years would be amazing… I would like 20 but I won’t be greedy. God has been holding me up and I pray His plan includes this momma being around for a bit longer. I read that right side colon cancer is less responsive to chemo, so I pray they got all of it out and in time before those dang nodes dispersed any more cancer into my body. I know its a waiting game. How did you fair thru the waiting?

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I don’t know much about your particular cancer. But I do know to do nothing usually doesn’t end well if you have an aggressive cancer.
Chemo gets a bad rap. While the side effects aren’t pleasant, neither is cancer or having it be fatal. Having gone through it and being on the other side I know how important it was to my positive outcome.
I had acute myeloid leukemia which isn’t generally staged. In my case it was an aggressive blood cancer that permeates the entire body. When I was diagnosed I was already at the critical stage and had no time for options. That’s often the case with AML. It can sneak up within weeks of death. I was in the hospital 5 weeks the first time, then admitted every 28 days for another 7 days of chemo until I could get a bone marrow transplant. So your cancer and mine are not similar but the goal is to be free and clear of cancer and go about our lives!
It has to be so frightening being a single mom and worrying about the future for your son. Keep that forward thinking because I firmly believe having a positive outlook and to have little achievement goals can work wonders to keep us motivated. I pushed through some ‘god-awful’ days for the same reason you did…I want my grown daughter to have her mom and my husband to have me around so I can tell him what to do. 😅 I wasn’t finished on this planet yet so that drove me to keep me going on day at a time.

How did I get through the waiting? Well, I’m really good at compartmentalizing things. I didn’t dwell on anything such as ‘what if’… I dealt with things as they were tossed at me. I walked several times daily, kept on painting or reading, I binge watched movies or series on days when I couldn’t do anything constructive. Some days I swear I got through 5 minutes at a time. You’ll do the same! You have a great attitude and a spirit of endurance. You’re a mom…you have super powers. 🙃

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