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xeloda and feet: deep blisters - advice??

taraHK
Posts: 1961
Joined: Aug 2003

Hi All,

I'm on Xeloda (and other stuff). Was on Xeloda before and did have various problems with my feet (blisters, peeling skin). Having a lot of difficulty this time and only on round #2 (starting #3 tomorrow).

Biggest problem is that, especially at the balls of my feet, I have "blisters" -- but seem to be very deep -- not surface -- quite large and VERY sore. (OK - I did wear heels the other day -- dumb, dumb, dumb -- but it was just for a few minutes!). I don't think any creams will help this, as it's not surface -- any other suggestions?? Suggestions most welcome!

Do you think reducing dosage might help? I'm on 3 pills, twice a day. I weigh about 130 lbs. I'm on a schedule of 5 days on, 2 days off, 5 days on (2 week cycle).

Any advice much appreciated

Tara

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Tara, you're on a small amount of xeloda I think. I take six 500 mg xeloda a day for 14 days straight, with one week off.
My onc, told me right off the bat, wear socks and thick soles, hence I were my tenny runners (I think you call them Tennis shoes or running shoes or something?).
I've been on Xeloda since March 1st and haven't had any problems, but I think to my advantage I had always gone barefoot and have smooth yet tough feet. Whenever possible, I am barefoot out in the grass though even on Xeloda.
I highly suggest putting your feet in a nice whirlpool bath for feet with epson salts, then put on a nice pair of thick socks and some slippers and put them up off the floor.
Wish I had better suggestions!!

taraHK
Posts: 1961
Joined: Aug 2003

Thanks for this. I think I'm on the same dosage but can't remember now. Meant to say 10 days on, 4 days off (=14 days - duh).

The whirlpool bath with Epsom salts sounds great -- I may try that -- although I'm finding hot water seems to make my feet worse (I have a hot bath with my feet sticking up out of the water!).

Thick socks and well-padded shoes sounds very sensible...I'll have to be more disciplined about that.

Thanks again

Tara

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

See if you can handle just a warm water whirlpool bath then for those feet

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Tara,

I am having the very same issue right now with the hand/foot syndrome from Xeloda. I'm also on 3 pills 2x/day, which is 3 500 mg pills in a.m. & then again in pm (total of 3,000 mg/day for 2 wks (14 days), then 1 wk off, then start over again together in conjunction with the Gemzar and Avastin. Anyhow, I have had a very hard time with it the past 5-6 days. My 2 wk cycle ended yesterday, so I will hopefully be better in another day. I have been putting lotions and cream (especially Udderly Smooth) on my hands and feet nonstop & they are still very red, sore, cracking, and blistering. Like you, the blisters on the balls of my feet are quite deep. One I have now is so deep that I don't think it's going to pop. Dumb me- for the sake of the family- I agreed to go to the county fair on the 4th of July and am suffering from all the walking (hobbling, actually). I am hobbling around like a little old lady and can't open any containers with my hands at all. Typing doesn't bother me, just anything that causes me to have to squeeze my hand closed- each crease at the knuckles and the skin inbetween my thumbs and first finger is horribly red, rough, dry, and sore. I was in my onc office for bloodwork today and they looked at it. They didn't really offer any suggestions other than what I already know- slather myself in udderly smooth and soak in cool water & avoid water that is too hot. Oh- about the soaking- I went in the hot tub last night against my better judgement. That made it worse. Then I came home and soaked my feet in water that had ice in it- that actually did soothe it some. I know that a reduction in dosage would help, but my CEA has been dropping lately, so I hate to reduce the dose because I want the dang tumors to shrink!
I can get through it only because I know it will get better when I have my "off" days.
If I were you, I'd ask the onc about changing the schedule a bit, so that you can have an entire week off, not just the 4 days. That's barely enough time to recover from the Xeloda's side effects. I believe the typical timing is a 3 week cycle of 2 weeks on, then one week off, regardless of the dose you're taking.
I'm actually going to get an extra week off coming up because we're rearranging the schedule for an upcoming family vacation (because I definitely could not go on a trip, sightseeing, etc. with my hands and feet like this).

Take care & start slathering your feet in thick shea butter types creams. Aquafor also works, but I like the Udderly Smooth the best. Don't know if you can get those brands in Hong Kong, but maybe something similar.

Best wishes to you,
Lisa

taraHK
Posts: 1961
Joined: Aug 2003

Hi Lisa. I'm sorry you are experiencing similar symptoms -- but I really appreciate all the advice.....I'm seeing my onc tomorrow and I am planning to discuss some change to the schedule....like you, i don't want to reduce the dose - coz I want to HAMMER my "spots". I realize some of what I'm experiencing is my own fault (like those heels! And my reluctance to give up walking as exercise -- I need to accept and turn to yoga, weights, ?swimming). But I also think this dosage/schedule is pushing it....I'm on a 14 day schedule with my other drugs (XELIRI) but I may ask him about a 3 week cycle for the xeloda or just a few more days off....he's flexible. Meanwhile, I'll keep slathering on creams. But my main issue is deeper....I know what you mean about hands -- The creases are sore -- but I think mine is not so bad as yours -- I'm just "aware" - not too bad yet. Hang in their, friend! I had an extra week off this time. Very nice -- but I'm ready for another round now! Love, Tara

jillpls's picture
jillpls
Posts: 241
Joined: Mar 2008

Hi I had the same problem. Deep blisters that took a long time to surface and then peel. I had to go to 1 week of pills and then 2 weeks off otherwise I couldn't even walk at all. I use "blister free" running socks from SmartWool. They seem to help with the blisters. I use all Smartwool socks when walking. Hope this helps.
Jill

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

and i get fu5 pump for three days. two treatments ago, leuvorican was not available due to line stoppage. it still is not available as of Monday this week. and it pisses me off.

i did get leuvorican in my chemo cocktail before this line stoppage. it is to fight the side effects of the fu5. without the leuvorican i am now experiencing bad foot pain with peeling skin, bad hands, and food tastes really bad. all these side effects are new for me since i'm not getting the leuvorican.

so i guess what i am saying is did you used to get leuvorican for side effects, i'm not familiar with the xeloda pills. if you did get the leuvorican and are now experiencing side effects it may be that it is no longer available right now.

wish i could do something. the manufacturers of cancer drugs should be on tight regulation. if we need the drug it should be available.

well i just googled it an it is spelled leucovorin. and it's usage is different than what i was told. anyway i am experiencing more side effects and it does make me mad that it is not available.

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Tesslee,

Sorry you're experiencing the side effects of the 5FU without the leucovorin. I have been on the 5FU pump w/ leuocovorin a few times before. I always was told the leucovorin made the 5FU absorb and work better- no one had ever mentioned that it had anything to do with its side effects. I'd ask your onc if he thinks the 5FU really is even getting absorbed enough to work well without the leucovorin. I remember hearing something about a leucovorin shortage. Frustrating, I'm sure. Maybe, in light of the shortage, you should talk to your onc about switching to Xeloda pills. It really is quite liberating to not have to drag around that pump, go back in to get it unhooked, etc. How I hated that 5FU pump! Even enough to put up with slightly more intense side effects while on Xeloda. Apparently not everyone experiences more side effects with Xeloda- some do, then some experience more with the 5FU. I had worse digestive/diarrhea with the 5FU, but this hand/foot syndrome is worse in me with the Xeloda.

Lisa

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

thanks Lisa for explaining what this drug does. i googled it but my brain is in funk and no energy and it's a bother to read and understand at the same time. i will ask my onc about the pills and the absorption of the 5 fu. if it's true about not being as affective or absorbed as well i would like to switch. but otherwise, as much as i hate that pump, i would rather be on 3 days and off 11 days than on the pills for 14 days and off 7 days. i am assuming you do not need the leucovorin if you are on the pills??

oh and i was directly told by my onc nurse that this drug was not a cancer fighting drug but instead a side effect drug for the fu5 so i need not worry about that. then i was told about the extra side effects i might have.

kinda disturbing. i'll talk with my onc monday. meanwhile tomorrow i see my cancer therapist at same office tomorrow and will ask her about this. thanks.

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

well i talked with my therapist and she explained the use of luvorican. it does affect the absorption rate of the fu5 but does not hinder in any way what the fu5 does. because of the change in absorption rate without the luvorican, this is why more side effects can occur.

she will be talking with my onc about what to do about this on monday.

good luck to all of us with sore feet and hands. i know in the past (pre cancer) i would use bee balm, Burt's Bees, on my feet then wear their special socks to bed. i had the prettiest feet, lol. now all i want is painless feet, time to find the bee balm, i know i still have some left.

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hello, I know I haven't been around on the forum much lately, but I do browse and your post caught my eye. I had a hard time on Xeliri w/ the hand and foot syndrome and they did cut back on my dosage. Another thought, was although it is more inconvenient, if it gets really bad could you switch to 5-FU again? I was only on the Xeliri for 6 rounds and after I got finished of course I improved quite a bit, but if you have to be on it for a long time, maybe you could just do 5-FU? Just a thought. I am glad to hear you are hanging in there!
I had to give up overnight backpacking the summer I was on Xeloda..but was still able to do some shorter day hikes. The key thing to me seemed to be the added weight.
Anyway, good luck w/ this. How many rounds are you supposed to do?
-Susan H.

Brenda3.16
Posts: 211
Joined: May 2009

Hi Tara,
I have been on Xeloda since Sept 2009 and added Avastin Feb 2010 to the Xeloda. I am taking 3000mg a day. I take the Xeloda for 7 days then am off for seven days. My oncologists has me taking vitamin B6 twice a day. My hands are dry and red but don't bother me too much. My feet get very sore. They feel best in sneakers. I put bag balm on every night then put socks on. The bag balm seems to help. I am still able to walk 3 miles at a fast pace, with good socks and sneakers on. Good Luck. Brenda

taraHK
Posts: 1961
Joined: Aug 2003

Hi All. Spoke with my onc today. I will be changing my schedule a bit (4 days on, 3 days off - x2). Really appreciate the suggestions regarding socks and sneakers. Good luck to all with ouching feet! I'm going to try to keep walking coz it makes me happy -- but will switch to other things for a while if I need to....

Tara

taraHK
Posts: 1961
Joined: Aug 2003

Hi Susan! Lovely to hear from you. Yea, I'm thinking that if the feet get really bad I may need to switch back to 5FU. I do prefer the convenience of the pill -- and in other ways the side effects are better for me (seems gentler on my white blood counts). But, if I can't walk - ! Thanks for the inspiration on day hikes... Not sure yet how many rounds -- they are saying 8-12. I'll have a scan after 4 (probably every 4) and see....
Tara

vhtqm1's picture
vhtqm1
Posts: 107
Joined: Feb 2010

yes, i have experienced this side effect and this is what has helped. i use a non alcohol based lotion like Eucerin but before applying lotion clean my feet and hands very well. any visually affected area that may be questionably infected i use some antibiotic ointment first then apply the lotion. try not leaving your skin exposed so often by wearing socks and even gloves at times throughout the day and or night---this helps retain the moisture and last but not least eat a diet high in protein because this promotes healing. hope this helps.

ed

ozitinkerbell
Posts: 2
Joined: Jul 2010

hi mine were very sore and cracked and i found johnsons baby lotion with vitamin e and aloe vera very soothing i put it on then put plastic bags on my feet then some thick socks and left them for the day sounds crazy but it helps also was nice for my hands put lots on and massage in then some more take care i care
ps dont forget the plastic bags lol

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

Husband was on Xeloda and a dose reduction did help some. You may want to ask. Lisa gave lots of good info. I hope it helps. Paula

dorookie
Posts: 1736
Joined: Jul 2007

Lucky if one can relate to that being in the situation we are all in...LOL...I was on Xeloda for 8 months, almost 5000 mg a day for 14 days, then 7 days off. I never had the peeling, I do however have the numbness, tingling and neurophy. Sure hope you get to feeling better soon....

HUGS
Beth

classicman's picture
classicman
Posts: 34
Joined: May 2010

I was on a heavy dose of Xloda taking 7/500 mg tablets for 14 days the off 1 week, on the following week id get my 4 hr infusion of Evastin, my feet got terrable sores deep and painful, my last chemo treatment was Jan 2010, and i still get the blisters on the balls of my feet, but not as big, my Onc said they could come and go for a long period of time so i wonder is the rat poison still floating around inside my blood, is it even safe to kiss my girfriend????

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Frankie Java's picture
Frankie Java
Posts: 3
Joined: Nov 2017

Just getting started on Xeloda, does anyone have a recommendation for comfortable socks? 

Tunadog's picture
Tunadog
Posts: 232
Joined: Mar 2017

Thick ones for camping ⛺️ 

I have not had any problems, Good Luck 

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