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Hand Foot Syndrome

Posted: Thu Aug 29, 2019 5:02 am
by TinaFish
Sorry because I'm sure this has been discussed, but I couldn't find any old threads with this title.

So I had a 5FU infusion in the hospital back in mid-June; after that, I've been taking oral Xeloda (Capecitabine). It seemed like things were going fine, but about a week ago, I noticed something strange on the BACK of my hand!

Let me explain: I'm an artist (and I also do my own acrylic nails) and I probably use glue (including krazy glue) more than the average person. About a week ago, I looked at my right hand and noticed that there was (what I thought was) dried up krazy glue on the first knuckle, on the 2nd knuckle, and also a little smear (really does look like a smear, about 1/2" long) nearby my wrist. I wish I could take a photo to show you guys, but I'm writing from my phone, and I only see the option to embed an image that's already uploaded to a server. I don't have FTP access from my phone- does anybody??

Anyway, it *looks* like the glue spilled on these areas and dried while my hand was flat (not clenched into a fist). Please bear with me while I explain. So imagine you put some krazy glue on your knuckle while your hand is laid flat on a table. Allow the glue to dry completely. After that, make a fist. The glue will split and crack when it has to stretch around your knuckle. Therefore, areas of skin on your knuckle that are normally hidden while your hand is flat, will now be exposed. And these areas will look totally normal, and not have any glue on them.

That's exactly what my knuckles look like. And to make everything more prominent, it looks like the dried glue has attracted some dirt. That's the only reason why it even got my attention. The skin is dark in those areas. No itching, no pain, and once I discovered it, I just left it alone because I'm kind of accustomed to having glue/paint/whatever on my hands. It just comes off on its own - no need to irritate my skin or hurt myself trying to peel it off.

I googled hand-foot syndrome, and it's described as being on the palms of hands and soles of feet. It also mentions that moisturization of the skin is necessary as a preventative. I live in Los Angeles. We really don't get dry skin here. No need for lotion/cream when you get out of the shower. So I thought that the moisturization requirement didn't really apply to me.

This "stuff" on my hand hasn't been bothering me at all, other than the fact that it's kind of unsightly. I went in for chemo today, however, and another oncologist (not mine) said that it's hand/foot syndrome! But it doesn't fit the descriptions of what I'm reading on the internet! I'm scared to try to peel it off. I could injure myself and make it worse. Please give your feedback! I put Palmer's Cocoa Butter Formula on my hands and feet tonight. I love how it smells like chocolate.

Re: Hand Foot Syndrome

Posted: Thu Aug 29, 2019 5:30 am
by Beckster
Xeloda has been discussed on this forum...hopefully this will help answer some of your questions... I was on it for 6 months and developed H/F after the 3rd cycle. Dark hands and feet, sore and peeling skin. Xeloda dries out the skin and the saliva in your mouth. You need to buy a cream with Urea. "A study has found that a 10% urea cream helps prevent hand-foot syndrome better than a new antioxidant ointment called Mapisal in people who’ve been treated with the chemotherapy medicine Xeloda (chemical name: capecitabine). " If it gets really bad, your onc can adjust the dosage. Lather it on before you go to bed and cover your hands and feet with a thin sock or gloves....

viewtopic.php?f=1&t=61932&p=490814&hilit=Xeloda#p490814
viewtopic.php?f=1&t=62209&p=490924&hilit=Xeloda#p490924
viewtopic.php?f=1&t=61932&p=490295&hilit=Xeloda#p490295

Re: Hand Foot Syndrome

Posted: Thu Aug 29, 2019 6:25 am
by Jacques

Re: Hand Foot Syndrome

Posted: Thu Aug 29, 2019 7:02 am
by Jacques
TinaFish wrote:... Iwish I could take a photo to show you guys, but I'm writing from my phone, and I only see the option to embed an image that's already uploaded to a server. I don't have FTP access from my phone- does anybody??
....

You don't need FTP access. All you need is Internet access.

Just log in to https://www.imgbb.com and follow instructions for uploading an image from your phone, and for getting the direct link of this image for use on this board.

Re: Hand Foot Syndrome

Posted: Thu Aug 29, 2019 7:03 am
by Pyro
I’ve been on those drugs for years but never developed H&F thankfully but Keep the super glue handy if you ever go on erbitux or vectibux. The oncologist can fiddle with your dose if it gets worse, remember to show them.

Re: Hand Foot Syndrome

Posted: Thu Aug 29, 2019 7:24 am
by MeAndMine
I was just asking about this, Tina. I don't have any suggestions for you as you are farther along in treatment than I am. I meet with the radiation doctor next week to get started on the preliminary work up so I'm still weeks away.

My oncologist just said to use lotion like normal & recommended two different brands. He said there are two that he likes. One is Udder Cream. I googled it & realized I had seen it before in the store. It's a white container with black spots like a dairy cow. It's called Udderly Smooth hand cream. The other he recommended, is in a green container called O'Keeffe's Working Hands. When I looked that up, I saw they also have a blue container that says "healthy feet" and a lip balm, too. I don't know anything about any of those but thought I'd pass on the brands he talked about.

Maybe a boost in your water or sports drink would help, too? I'm not sure about that but seems like it couldn't hurt.

I don't think I'd try to peel it off. It might peel off into a raw spot that could get infected & that would hurt worse. I wish I knew more to help you. Feel better, my friend.

Re: Hand Foot Syndrome

Posted: Thu Aug 29, 2019 12:21 pm
by NHMike
Xeloda can cause discoloration, usually darkening of the skin. I don't think that this is under the category of Hand and Feet.

I had this on my top parts of my feet and the backs of my hands. It went away some time after treatment.

Re: Hand Foot Syndrome

Posted: Thu Aug 29, 2019 7:03 pm
by ginabeewell
For ultra moisturizing, the best I’ve found is Aquafor slathered on under socks or gloves while you sleep. This helped me with Vectibix side effects (splitting skin, etc).

Chemo itself is wildly dehydrating so I think safe to assume you’ll need to start using cream even if you haven’t had to in the past. I like both Cerave cream and Weleda Skin Food for daytime use.

Re: Hand Foot Syndrome

Posted: Thu Aug 29, 2019 7:07 pm
by zephyr
Henna will do the trick. Please feel free to PM me if you want directions.

Re: Hand Foot Syndrome

Posted: Thu Aug 29, 2019 10:44 pm
by TinaFish
zephyr wrote:Henna will do the trick. Please feel free to PM me if you want directions.


Really? But then my hands will be discolored by the henna, right?

Re: Hand Foot Syndrome

Posted: Thu Aug 29, 2019 10:45 pm
by TinaFish
Jacques wrote:
TinaFish wrote:... Iwish I could take a photo to show you guys, but I'm writing from my phone, and I only see the option to embed an image that's already uploaded to a server. I don't have FTP access from my phone- does anybody??
....

You don't need FTP access. All you need is Internet access.

Just log in to https://www.imgbb.com and follow instructions for uploading an image from your phone, and for getting the direct link of this image for use on this board.


Thank you! Jacques to the rescue again :)

Re: Hand Foot Syndrome

Posted: Thu Aug 29, 2019 10:50 pm
by TinaFish
Ok, the "smear" on my wrist, and the weird skin on my knuckles, respectively:

https://ibb.co/Hx6pFqZ
https://ibb.co/2ZzxYQ9

Please ignore the little two-line scratch nearby my thumb - that's just a little injury.

Re: Hand Foot Syndrome

Posted: Fri Aug 30, 2019 3:52 pm
by TinaFish
Bumping, sorry. Please see the pics in my previous reply?? I'd really like some feedback

Re: Hand Foot Syndrome

Posted: Fri Aug 30, 2019 4:59 pm
by Beckster
TinaFish wrote:Bumping, sorry. Please see the pics in my previous reply?? I'd really like some feedback


To me, it looks like darkening of your skin from Xeloda...here is a picture of the bottom of my foot after the 3rd cycle

https://ibb.co/vsWjS70

Re: Hand Foot Syndrome

Posted: Fri Aug 30, 2019 5:23 pm
by NHMike
Beckster wrote:
TinaFish wrote:Bumping, sorry. Please see the pics in my previous reply?? I'd really like some feedback


To me, it looks like darkening of your skin from Xeloda...here is a picture of the bottom of my foot after the 3rd cycle

https://ibb.co/vsWjS70


I concur. I had that and it went away several months afterwards. I only had it on Adjuvant Chemo, though, not Neo-Adjuvant.