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Xeloda feet

Jaylo969
Posts: 827
Joined: Jan 2010

This week has been so nice. I finally have some positive energy and have been working in my garden a little bit.It really helps with stress, anxiety, as well as weight gain.

This morning at 3:00 AM I woke up with my feet on fire and it felt like they were cracking all up.Have been walking on toes like a baby just learning to walk. What a downer!

I guess now I will tippey-toe on out to Walgreens and get some of that Udder Butter stuff. I was kind of wondering if annointing them with the Magic Mouthwash might help :)

I still plan to have a good day, darn it!!!

-Pat

dorookie
Posts: 1736
Joined: Jul 2007

I am still having problems with my feet. Sometimes burning, but mostly tingling and numbness, drives me nuttso, and let me tell ya thats a short drive...LOL

I dont remember having this problem with my first round of IV chemo, but doing the Xeloda the second round had really done a job on my feet.

Do you have one foot that is worse than the other? I do...

Hope you have a great day...

Beth

greybeard64's picture
greybeard64
Posts: 254
Joined: Mar 2010

Sorry to hear about your feet. Udder cream,the jar has a cow print on it, or bag balm which comes in a green square can, helped me. although the bag balm is really thick more so then Vaseline(patroleum jelly) Hope it helps and you can get out in that garden today.
my big plan is to get the peas onions and spinach I started as seeds in the house out to the garden.

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Hey Pat - Glad to hear you've got some energy. I haven't had any burning in my feet. They just feel slushy. Walked into a door frame yesterday. Whamm!!!
Hope your havin' a great day - darn it!!
Roger

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

oh Pat what a bummer....I didn't get the feet that badly

slather your goo on and then put on socks for sure....holds it in...other people here swear by different creams

smile and go for a little walk on you tippytoes...sorry trying to make you smile :) :)

big hugs,

mags

JR's picture
JR
Posts: 140
Joined: May 2009

I use the bag balm in the green can. Works good. Use on both hands and feet with gloves and sox. Although, my hands bother me much more than my feet. Good luck.

John

Jaylo969
Posts: 827
Joined: Jan 2010

Thanks folks! All advice/suggestions is welcome here. I Googled Hand/foot syndrome and all the sites say to call your Dr.immediately. Is that necessary since she has already discussed w/me that this might happen? I am on my week off Xeloda starting today so hopefully it will heal some and I see my Onc the day before I start a new cycle.Think I’ll just pitter around in my garden today and forget doctors and cancer for a moment.

Beth…both feet are equally affected. Neither one is showing any mercy. I didn’t have the foot thing with 5-FU although my hands itched and turned red.

Greybeard & JR…I couldn’t find any bag balm at Walgreen’s. I bought something called ‘Udderly Smooth’ udder cream. Feels pretty good going on. ( I just remembered the word “udder” when I got to the store…should have written it on paper )

Roger, I took your advice about getting out and thanks. Good advice for me. ( Try to watch where you are walking, ya’ hear? )

Mags, you did make me smile. I’ll be outside tiptoeing through the tulips today.

-Pat

dorookie
Posts: 1736
Joined: Jul 2007

I am curious as to how much Xeloda you are taking? I took 4600 mg a day for almost 8 months, 2 weeks on one week off, and its been over 9 months and I am still having problems, everyday with my feet. It sucks...sure hope yours get better soon..

Beth

Jaylo969
Posts: 827
Joined: Jan 2010

Beth, I am on 3,000 mg daily...2 wks on, 1 wk off.I have 5 more treatments/cycles. My Doc says that every 3 wks when she sees me we will reassess everything.I think she is about ready to take me off of chemo completely but I am not ready to do that....yet. I want to give it my best shot and then I'll be content to let the chips fall where they may.

Is your feet problem due to neuropathy or is it the hand/foot syndrome ( or both?)

-Pat

dorookie
Posts: 1736
Joined: Jul 2007

actually, was told it was neuropathy, what is the hand/foot syndrome?

Jaylo969
Posts: 827
Joined: Jan 2010

Hi Beth...hand & foot syndrome isn't the same as neuropathy although both suck.

Hand-Foot Syndrome
Other terms: Palmar-Plantar Erythrodysesthesia; PPE

What is hand-foot syndrome?

Also called hand-foot syndrome or hand-to-foot syndrome, Palmar-Plantar Erythrodysesthesia is a side effect, which can occur with several types of chemotherapy or biologic therapy drugs used to treat cancer. For example, Capecitabine (Xeloda®), 5-Flurouracil (5FU), continuous-infusion doxorubicin, doxorubicin liposomal (Doxil®), and high-dose Interleukin-2 can cause this skin reaction for some patients. Following administration of chemotherapy, small amounts of drug leak out of very small blood vessels called capillaries in the palms of the hands and soles of the feet. Exposure of your hands and feet to heat as well as friction on your palms and soles increases the amount of drug in the capillaries and increases the amount of drug leakage. This leakage of drug results in redness, tenderness, and possibly peeling of the palms and soles. The redness, also known as palmar-plantar erythema, looks like sunburn. The areas affected can become dry and peel, with numbness or tingling developing. Hand-foot syndrome can be uncomfortable and can interfere with your ability to carry out normal activities.

http://www.chemocare.com/managing/handfoot_syndrome.asp

I REALLY wish someone would post directions on how to insert a link on this forum!

-Pat

abrub's picture
abrub
Posts: 2094
Joined: Mar 2010

I liked that much better than the Bag Balm, which is greasy. My onc suggested it.

Grease your feet well. Also ask about B6 supplements to cut the neuropathy/hand-foot syndrome

Good luck - it's no fun.

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

Hi Pat,

I've got that burning feeling like I'm getting cracks in my feet right now. I'm not on Xeloda, but I'm on 5FU. Weird, cause I didn't get this before when I took 5FU, but I did get it pretty badly from the Xeloda. When I took 5FU before, my feet peeled a lot and my hands turned dark, but no pain or burning. Lucky me, this time I'm getting all that plus the burning and blistering. Watch how much you walk- more walking will cause blisters to pop out. Last week I thought it was all over (since it was a week after I got the 5FU), so I went for a nice long walk. That evening I was regretting it, with blistering feet again. I'm going to go get out my udder relief cream right now and slather it on my feet, then put my socks back. I've found that nothing really makes this side effect go away, but the cream helps to soothe it.
Take care!

Lisa

Jaylo969
Posts: 827
Joined: Jan 2010

I am sorry that you are having the burned foot syndrome too. I'm sure walking and gardening caused mine too. I think Crow is the one who told me to walk....love him anyway..LOL.

My feet look & feel like I have walked barefoot in mid summer over a freshly paved tar road..ouch!

I guess I'll become best friends with udder cream now. Yesterday I put on some old crocs
( ugly shoes )and socks and I found the crocs didn't irritate like my other shoes.

-Pat

PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

to your garden, that's where I'll be so tiptoe, thru the tulips, with me ♪♫♫♫

I know what you mean with gardening being relaxing. I've started with planting a few iris bulbs and not I need to do spring cleanup since it's drying up a bit.

I have foot problems caused from Erbitux. I've always gotten very dry feet from treatment and I find Bag Balm to be the best on the feet. Rub it in after a shower and put a sock on the foot and it stays OK for the day. The Erbitux also sometimes causes these growths in the corner of where my toenail meets the skin on the side. They can hurt. I am on a short Erbitux break and things clear up very fast.
You know Jaylo, one can always sit on a milk crate or kneel on one of those mats while in the garden too.
;-)

Feel better. Enjoy your garden. Post photos when you can.
I'll try to do the same in a few weeks.
-p

Jaylo969
Posts: 827
Joined: Jan 2010

Weren't those the days?..LOL

I do know about milk crates and mats but the country girl in me refuses to remember that gardening has been modernized.I like to get down and get dirty. Seriously, I spent a day with my weedwacker and I believe that was what put the stress on the feet.Should have known better...doing too much too fast...but oh glory it felt so good!!!!

I will try to post some pics when the Azaleas bloom . They should be gorgeous! My Iris, Wisteria, tulips, Lilies are already blooming.They are late this year because of the very cold winter we had.

Can you tell me exactly where I can go to buy bag balm? Walgreen's didn't have it.

-Pat

dmdwins
Posts: 453
Joined: Aug 2008

Pat,

I also had severely red, burning feet(Folfox not Xeloda though). I used bag balm and it did help. But my mom had also gotten me a pair of slippers that had packs you inserted that could either be put in the freezer or microwave for hot or cold. I would freeze them and AAAHHHHHH...... instant relief for my burning feet.

I believe she got them at JcPenny but I bet you could find them other places that sell "spa" items.

I hope relief comes soon... mine usually lasted 2-3 days then better...until the next treatment(every 2 weeks)

Smiles,
Dawn

Jaylo969
Posts: 827
Joined: Jan 2010

I will look for them. I believe that would feel oh so good!

This is the 3rd day and my feet are still very red but feeling much better than they did a couple of days ago.

Thanks Dawn!

-Pat

greybeard64's picture
greybeard64
Posts: 254
Joined: Mar 2010

I am not sure if you have these around you but I got mine at Rural King. It's original use was for cow udders (dairy), that might bother some I guess I never thought about it one way or the other. From the sound of your posts (country girl) it wouldnt bother you either, lol.
If you dont have a rural king I would think any store that caters to farmers, livestock would have it, like Tractor Supply. Hope that helps, and it is MUCH greasier then the Udder cream. I used it pretty thick at night with socks, and a little less during the day as it does feel a little strange. strange is better then pain though.
I was out today planting some Peas that I started in the house, along with seeds for yellow and green onions, spinach. Ground is still really wet though so its hard to work still. getting your hands a bit dirty sure does get the mind in a good place though!! I'll try to post a pic of the Magnolia tree in our yard. It really did well this year, poor thing most years we get a frost right as it starts to flower and it cant recover we are just a bit to far north for it really.

dmdwins
Posts: 453
Joined: Aug 2008

Patti
There is a website...its bagbalm.com. It states that you can get it at drugstores,farm stores,pet stores,hardware stores, feed stores and tack shops. Also says if you can't find it you can order direct and gives you an email address.

Hope it helps..... its thick and greasy but does work.

Smiles,
Dawn

RickMurtagh's picture
RickMurtagh
Posts: 584
Joined: Feb 2010

Between hand and foot syndrome and neuropathy, in both hands and feet, I have been pretty unhappy some days. I have tried a few creams and they all seem to work to some effect for the hand/foot syndrome. Since finishing chemo, the hand and foot syndrome seems to be clearing up some. I had the unhappy occasion a few nights ago of having my large toe on each foot in pain (due to neuropathy), even at the touch of the sheet. I was beside myself (not really, that would be some trick, eh?) and needed to do something so I ran down to my local Walgreens, at 1:30 in the morning, and got myself one of those Scholl's foot massage/soak/bubbly things and some epsom salts. Like I said, I needed to try SOMETHING. Well to make a long story short, the soaking did crap for the pain, but after a week my feet are all but cleared of hand and foot syndrome and are as soft as my grandson's hind end. I checked today when I was changing him. Really, just as soft. Go figure.
I am thinking about trying to find a way to fix me eyes (I need glasses for reading) so that I might perhaps discover a cure for the pain and/or numbness in my hands and feet!

Jaylo969
Posts: 827
Joined: Jan 2010

I too have noticed that my eyesight is getting very bad since starting chemo. Prior to this I only needed drugstore reading glasses for small print.Last night I was watching the news and the lady reporting had 2 sets of lips..one right on top of the other.Sometimes it is worse than other times...

So now with 7 tx completed I can't see, can't hear, can't think, walk like a cripple, and my insides are inflamed. I woke up w/bruises on my stomach yesterday. Unfortunately no one had 'touched' me. Sure hope this chemo is killing the bad cells too....( early morning pity party..LOL )

It's gonna' be a lovely day. Spring has advanced into summer here. Was using the furnace last week; air conditioner this week.

Hoping your feet get better. It is hard to function when the feet hurt.

-Pat

RickMurtagh's picture
RickMurtagh
Posts: 584
Joined: Feb 2010

My close vision is much worse, but my glasses still fix my vision perfectly. I am not sure if it was the chemo, losing 60+ lbs or a combination of the two. I want to wait to have my eyes checked again until after my reversal April 20, just to let my weight settle to the new normal before I have them tested.

abrub's picture
abrub
Posts: 2094
Joined: Mar 2010

If you are done with chemo, you might want to try Alpha Lipoic Acid - 600 mg once or twice a day. It did wonders for me, giving me back my feet in short order. I was still having trouble walking a year later; within a couple of weeks of starting that ALA my feet felt significantly better. I met with an integrative medicine specialist who recommended this.

ALA is medically proven to help for neuropathy from diabetes. Here's a reference from Memorial Sloan Kettering: http://www.mskcc.org/mskcc/html/69117.cfm

Not good during chemo, tho, as it may lessen the effect of the chemo drugs.

Good luck.

coloCan
Posts: 1956
Joined: Oct 2009

since surgery in Sept cos I don't recall feeling it prior (maybe I was so messed up with other reactions that I never noticed this one). Which chemical caused it?-damned if I know!!

When able to finally walk outside I began using and continue to use a cane which helps with maintaining balance etc and keeps me from tripping (except when I trip myself over cane itself!)The numbness/tingling sometimes increases aFTER A DECENT WALK DURING WARMING WEATHER, MORE SO THAN IN WINTER WHICH i FIND STRANGE.Sometimes it feels like condition is improving but then it feels the same.If this is one of the prices to pay to eradicate my cancer, so be it......steve

Jaylo969
Posts: 827
Joined: Jan 2010

caused my neuropathy. Did you have Oxi? My neuropathy is bad today and an added 'goodie' is the darn, numb feet are burning and raw feeling. How can something numb burn??

The first tx I had I started feeling a tingling buzz in my left calf. Onc nurse said it was the chemo. Every treatment got worse & worse until I was getting ready to go up to my Mom's and get the walker she used with a broken pelvis.I was walking like a drunk sailor!

Then when it got into my hands the doctor says "No more". I was upset, but now I feel that she was right. It's just that by having chemo with Stage 2 it betters the odds only by about 7% with Folfox. Changing to Xeloda it decreased that 7% to about 4%. I am through 7 treatments with a so-called 4% better odds and suffering crazy, sucky side effects and starting to wonder is this worth it? I've never been a quitter but I'm finding myself humming the tune Kenny Rogers sang....You gotta' know when to hold up, know when to fold up, know when to walk away, know when to RUN...But, I ain't running yet. I'm having a 6 month colonoscopy on the 22nd of this month. Depending on what turns up there I might be open to other solutions.

Have a real good holiday.
-Pat

greybeard64's picture
greybeard64
Posts: 254
Joined: Mar 2010

Hang in there!....wow I think I am even sick of hearing that, but what else to say? I am sending you good vibes. You remind me of my Aunt as she also laughs when she is hurting. I hope the week-end brings you some relief and a boost to your fighting strength! Your in the "storm" now so to speak, but it WILL get better, lets of people on here sending good stuff (vibes, sparks, prayers) your way.
greybeard

Jaylo969
Posts: 827
Joined: Jan 2010

Thank you greybeard! I'm hanging in :)

-Pat

Jaylo969
Posts: 827
Joined: Jan 2010

My PCP who is also into alternative or complementary medicine recommended the Alpha Lipoic Acid from the beginning of chemo. My Onc prefers I wait. I still have 5 cycles of Xeloda to go.If I could have stayed on the Folfox I would have been finishing up the 1st week of May. Now it looks like it will be the end of June...3 week cycle screwed me and my plans up.

Thanks for the information. I will check out the website you posted.

Best wishes to you.
-Pat

coloCan
Posts: 1956
Joined: Oct 2009

first to left fingers/hand and then right hand. The right hand for some reason stopped real suddenly while the left, very annoying and limiting in use, also subsided and then came back intermittently and for a few minbutes-can't explain this.

Yes, I was on the Evil "O" both preop and postop, first with Xeloda and radiation, then in the mixture we love as FOLFOX.

One more f..... dose of chemo to go!!!!!!

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hi Pat

Great suggestions abound here - you've found you're not alone. Xeloda is tough on the feet and you're right it is miserable when you have a hard time standing and walking.

Bag Balm worked good for me as well - it's supposed to be at your local pharacy, can't believe your WalGreens's did not have it. Do you have a CVS up there? I believe that is where I got my tin.

I liked this because it was so greasy it moisturized your feet and held it in. I used it 3x a day - before work, after work, and right before bed.

Glad to see you up and around enjoying what you can.

-Craig

Jaylo969
Posts: 827
Joined: Jan 2010

Craig,

I went out today to Kmart, Fred's and another Walgreen's. No Bag Balm. You know, just kinda' wondering....this state I live in is strange.Just about everything is illegal. Maybe there is a ban on bag balm here? You know, because it is for (Udders)?

I'll try to find a CVS that has it or just do the easy thing and order online.

Thanks for the well wishes. I am determined to stay up and about.

-Pat

abrub's picture
abrub
Posts: 2094
Joined: Mar 2010

Do you have any farm supply stores? You might find it there. I've seen it at CVS, as well as Udderly Smooth.

RickMurtagh's picture
RickMurtagh
Posts: 584
Joined: Feb 2010

Some stuff I got at walgreens - basically aloe with a few other things in it - worked really well for me and was very cheap - not as greasy as most.

biglaur's picture
biglaur
Posts: 72
Joined: Apr 2010

I'll just add my thoughts...and what worked for me. Bag balm and udder cream were great. My hands and feet blistered and completely peeled several times. The microwaveable sox and gloves are FABULOUS. But the best luck I had was with Cymbalta. Yes, the antidepressant. I'm not depressed, but my doc prescribed it because it has been found to help diabetics with hand and foot. Wowsers...within days I felt TONS better. As soon as I was finished with my 6 months of Xeloda...I weaned myself off the Cymbalt and within 6 weeks, all numbness and pain was GONE.

Jaylo969
Posts: 827
Joined: Jan 2010

The foot stuff started on the 14th day of 2nd cycle of Xeloda. It lasted 3 days with my feet.They are now more or less "ok". Hands were already messed up from the 5-FU. My hands are still swollen and red but don't burn like when I was on Folfox.Looks like I have on red baseball gloves..LOL

Go to onc tomorrow. Any bets on what she'll say? Dose reduction?

-Pat

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hi Pat

You can certainly talk to them about reductions - this might really help you.

Not sure what mgs a day you are taking, but it sounds like they have you on a 14/7 plan right now. I'm assuming you are taking between 3000-4000 mgs a day.

As you're discovering, the toxicity of this drug builds up on you each cycle and you are seeing the effects about now on your 2nd cycle. I did Xeloda for about 9-months and we tried several combinations.

On the last few cycles I took, we adjusted my dose down to 7-on 7-off and I took 3 Xelodas twice a day @ 500 mgs each. While we only reduced the actual dosage about 1000mgs a day, chaning it from 14/7 to 7/7 really helped the toxicity issues and made it more tolerable. And only having to do it twice a month, meant only ONE prescription and not 2, so it will save you money.

Your onc might eventually consider making some changes the longer you are on this "medicine."

I found it was harder on my stomach as time marched on too, but would take some meds and made it ok.

-Craig

Jaylo969
Posts: 827
Joined: Jan 2010

Hope you are having a beautiful day!

I started out on 3,300 mg Xeloda and was reduced to 3,000 the next cycle.Start 8th cycle tomorrow.

Have an Onc appt in 2 hrs.

Tomorrow...who knows what dose I'll be on? Doctor has said that we will reassess my status every 3 wks.

I feel real good today :) :) Happy, Happy

-Pat

coloCan
Posts: 1956
Joined: Oct 2009

took 1650mg every morning, 1500 each evening, Sun night to Fri morn, five straight weeks, with once a week oxy infusion and 33 days of radiation prior to colostomy.....No break for the weary......Enjoy weather; its in 70s here......steve

john1960
Posts: 8
Joined: Apr 2007

Frustrating, isn't it? I've been experiencing HF Syndrome from Sutent (sutinib) for nearly 3 years.

I find the chilled shoe inserts help enormously. Anything cool helps some with the burning. I keep a tube of Amlactin Foot Creme in the fridge just for that purpose. Gold Bond Pain Relieving Foot Creme is also a help. (You can get these at www.drugstore.com.)

I've also found using Walgreen's Aloe Vera with Vitamin E lotion from the start of each round of treatment helps a lot. I put that on first and then use Bag Balm. I get more relief starting this the day before or day of the first treatment. It seems like it helps head off some of the discomfort. The combination seems to help with the burning and reducing the peeling that always comes about in the last weeks of the drug cycle. I've also gotten some relief from the burning with DMSO.

Although I haven't gotten any relief from it, some friends swear by "The Henna Treatment" for HF Syndrome. There's a recipe here: http://thyroidcancerfight.blogspot.com/2008/09/formula-for-henna-treatment-for-hand.html .

Hope things go well for you and that you get some relief!

John

Jaylo969
Posts: 827
Joined: Jan 2010

I'm sending you a PM regarding the thyroid treatment. I had it in 1999.

-Pat

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