r/LivingWithMBC • u/Something_Kristen • 3d ago
How to cope with hand-foot syndrome?
I am on the second week of my second cycle of capecitabine (Xeloda), and the itchy, painful, swelling redness in my hands and feet as a result of the hand-foot syndrome that is a common side effect is almost unbearable. I have heard from several women in my metastatic breast cancer support group that those who took the drug were able to take it for anywhere between six months to two years, so I don’t want to have to transition off of it, as I haven’t even done a 3-month scan to gauge whether it’s working. That said, the side effects are excruciating, and I wanted to know if anyone had any recommendations on how to deal with it, besides a urea cream. Thank you in advance for weighing in!
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u/Intelligent_Mud_19 3d ago
hiii i’m so sorry you’re dealing with that. what’s your dosage and schedule? i just wrapped up cycle 3 but im on a low-dose regimen of 1000 mg 2x a day, 14/7. i was really worried about HFS and read that there’s been studies that show xeloda is just as effective on a 7/7 schedule and is way more tolerable. my oncologist said depending on HFS we could also try 10/7. from what i’ve read it’s super common to adjust to 7/7 and has helped many people a lot
my personal combo is voltaren, let it dry. then apply urea cream. and then throughout the day i also apply working hands. when im out and about i have a travel sized bag balm that i apply any time i wash my hands. i also try to use soap less than i used to. when it starts to get more irritated ill also wear socks to sleep even though i hate it
what does your oncologist say? imo it sounds like it might be reasonable to consider an extended break to give your existing flare up time to heal versus it progressing even more. i had a small flare up day 10 of my second cycle and they wanted me to pause for 2 days to give it time to go down before finishing the last 2 days
hoping xeloda works for you for a long time to come ♥️
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u/Something_Kristen 2d ago
Thank you! My current dose is 2000 mg 2x/day, 14 days on, 7 off. I am on my second cycle, and I will begin my week off on Wednesday. I met with my oncologist, and he did not suggest a dosage change, but maybe I didn’t make it clear how uncomfortable I was I will be sure to broach the subject with him again. Looking into Voltaren now, thank you!
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u/156102brux 2d ago
Voltaren. There is good science behind it.
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u/Something_Kristen 1d ago
I bought some and have been following some of the regimen outlined below with Voltaren during the day and Urea cream at night.
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u/Fighting_kat23 1d ago
Great advice!!! Much appreciated! I hope all of you continue to improve on your current lines. Hand/foot syndrome is no joke. I've experienced it on and off through 1st line treatments (TC + Keytruda and AC + Keytruda), but was told to expect to be on Xeloda following surgery. This will help me greatly! 😁
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u/Celestial_Lorekeeper 20h ago
I've been taking Xolada for about two months now give or take. When it was decided to switch to it, my oncologist did warn about hand- and- foot am syndrome and advised something like O'Keefe to help combat it. I've been using it 1-2 times a day every day, and I've not had issues thus far.
Aside from that, I'd check with your oncologist for anything they can suggest. I faintly remember my onc saying they could prescribe something for me if it was needed, though I don't know what exactly.
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u/BudgetImpossible2432 6h ago
I was using a 5% urea cream and got excruciating itching on my hands. Oncologist recommended 40% but I know you can get higher %.
I also mix it with udder butter on my feet at night and have thankfully been doing OK. My xeloda dose is 1700mg x2 day.
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u/Flaky_Amphibian_5597 3d ago
I am in my sixth cycle. Voltaren twice daily (get the gel rather than cream), Urea cream of 25% or more and out this on when needed but especially at night. I soak my feet a couple of times a week in luke warm epsom salts. I changed from HIIT and jogging to pilates & weights. I have gel cushioned half socks to protect the pad of my foot (as this is where it gets hot and can peel). Blister pads if any friction blisters arise. I have cotton socks and gloves for bed. All this and it’s been really manageable for me, but I know others in the group had dosage changes and even went to 7/7 instead of 14/7. There’s a lady in one of the communities on her 52 cycle so fingers crossed for us both.