Xeloda feet

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  • coloCan
    coloCan Member Posts: 1,944 Member
    abrub said:

    HFS & neuropathy
    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.

    My neuropathy in toes and feet bottoms has been with me
    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
    Jaylo969 Member Posts: 824
    coloCan said:

    My neuropathy in toes and feet bottoms has been with me
    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

    Steve I think the oxi
    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
  • Jaylo969
    Jaylo969 Member Posts: 824
    abrub said:

    HFS & neuropathy
    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.

    abrub
    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
    coloCan Member Posts: 1,944 Member
    Jaylo969 said:

    abrub
    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

    Pat, during the winter the neuropathy had started to spread
    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
    Sundanceh Member Posts: 4,392 Member
    Agreed
    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
  • greybeard64
    greybeard64 Member Posts: 254
    Jaylo969 said:

    Steve I think the oxi
    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

    Hang in there
    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
    Jaylo969 Member Posts: 824

    Hang in there
    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

    Good Vibes received
    Thank you greybeard! I'm hanging in :)

    -Pat
  • Jaylo969
    Jaylo969 Member Posts: 824
    Sundanceh said:

    Agreed
    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

    Bag balm..
    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
    abrub Member Posts: 2,174 Member
    Jaylo969 said:

    Bag balm..
    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

    bag balm
    Do you have any farm supply stores? You might find it there. I've seen it at CVS, as well as Udderly Smooth.
  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    Jaylo969 said:

    Bag balm..
    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

    miracle foot cream
    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.
  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    Jaylo969 said:

    eyesight Rick
    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

    eyes
    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.
  • biglaur
    biglaur Member Posts: 72

    miracle foot cream
    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.

    2 cents worth
    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.
  • dorookie
    dorookie Member Posts: 1,731
    Jaylo969 said:

    Xeloda dose
    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

    Not sure
    actually, was told it was neuropathy, what is the hand/foot syndrome?
  • Jaylo969
    Jaylo969 Member Posts: 824
    dorookie said:

    Not sure
    actually, was told it was neuropathy, what is the hand/foot syndrome?

    Hand foot syndrome vs neuropathy
    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
  • Jaylo969
    Jaylo969 Member Posts: 824
    biglaur said:

    2 cents worth
    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.

    Thanks for all of the suggestions
    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
    Sundanceh Member Posts: 4,392 Member
    Jaylo969 said:

    Thanks for all of the suggestions
    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

    Xeloda Cycles
    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
    Jaylo969 Member Posts: 824
    Sundanceh said:

    Xeloda Cycles
    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

    Hey Craig
    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
    coloCan Member Posts: 1,944 Member
    Jaylo969 said:

    Hey Craig
    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

    Had no break with Xeloda....
    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
    john1960 Member Posts: 8
    Hand-Foot Syndrome
    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
    Jaylo969 Member Posts: 824
    john1960 said:

    Hand-Foot Syndrome
    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

    thank you John1960
    I'm sending you a PM regarding the thyroid treatment. I had it in 1999.

    -Pat