Xeloda/Tykerb and big toes --- OUCH!

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Faith316
Faith316 Member Posts: 2,431
edited June 2014 in HER2+ (Positive) Breast Cancer

Actually now just on Tykerb but this all started while I was taking both.

 I have been battling my big toes for months and months. I know it is part of the hand/foot syndrome side effect but it is relentless. When I took 12 weekly Taxol treatments (Sept. - Nov. 2008) I had it to some degree but nothing like what I have had while taking Xeloda and Tykerb from July 2009 - January 2010. I'm no longer on Xeloda but still taking 1500mg Tykerb daily. My big toes hurt SO much. The sides of the nails are swollen and incredibly sore all the time. I can barely touch them. I am wondering if it is ingrown. Both feet are affected but it varies day to day which one is worse. Right after I quit taking the Xeloda in January, it started improving greatly along with the terrible cracks/cuts on my hands and feet. A month ago in March, the cracks/cuts on hands and feet started up again although not as severe. Also, the Tykerb rash which is more like acne reappeared. (I had it briefly last summer but then it went away. It seems odd that it would start up again 8 months after I started Tykerb.) And, especially, my big toes started getting really bad again. I am SO SICK of dealing with these toes. It hurts a lot. When the Xeloda stopped and things got so much better, I thought, finally I was past all these side effects. Can't believe it started again.

Have any of you had a big problem with your big toes during chemo? Anybody have ingrown toenails as a result of it? And, if so, did anybody go to a podiatrist about it? I am scared to go to a podiatrist but know I'm going to have to. I'm afraid that what he might do could be very painful. Anybody done this and can share with me what was done to help?

Thanks in advance for any replies.

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited April 2010

    My big toe on each foot has been  incredibly painful.  really, really, sore.  I was on TCH, but now i am on every 3 weeks of Herceptin until july.  What stopped the first big toe problem was when I went on antibiotics for a cold--after that my toe was fine!  then in the last month, the other toe has started up and gotten bad.  i am on antibiotics now for bronchitis and my toe is getting better.  This is the first i have heard anyone mention this problem, but if you have it its awful.

    anyone else out there? 

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  • Kellke
    Kellke Member Posts: 424
    edited April 2010

    My feet and hands are red and tender but not terrible or cracked. I have been only taking xeloda/tykerb a couple months.

    I would go to the podiatrist and see if they can offer any help since they may be able to help with the pain. They see more feet than the oncologist :)          Good luck!  Kelly

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  • jneumann
    jneumann Member Posts: 67
    edited April 2010

    My feet and toes swell on the upper part of my foot but I haven't had the cracks, sores or toe problems.  My problem is diahria, dehydration and drop in potassium level.  I have been on Xeloda/Tykerb for a couple of months and just hate these side effects because they leave me drained to where I cannot do anything or I end up in the hospital getting fluids and potassium.  This cycle I am just doing Xeloda, no Tykerb to make sure it is the Tykerb that is causing my problem then we will reintroduce the Tykerb one pill at a time.  Anyone else have these side effects?

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited April 2010

    I've had the toe problem and I soak in either epsom salts or betadine.  Then I put on a RX clinamycin (antibotic) gel one nite and RX strength hydrocortisone (reduces swelling) the next.  It really helps with the swelling and pain.  For the cracks, I use the bag balm & shea butter and socks, but that doesn't always do the trick.  I usually carry around a bottle of super glue.  I glue the cracks in my fingers and heels and get almost immediate relief!  I also read on the stage IV forum on a post by Heather P. that she got some lidocaine patches and put those on her feet.  I suggested that idea to a friend who is on xeloda (I'm on tykerb) and they had amazing relief from the pain.  The only other solution I know is a dose reduction, but who wants that?!  Best of luck to you!!!   lisa

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  • jneumann
    jneumann Member Posts: 67
    edited April 2010

    Lisa, do you have any problems with Tykerb?  I am having the toughest time tolerating it, the xeloda is ok and sort of constipates me but that is it.  But the tykerb is a real tough one.

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  • Faith316
    Faith316 Member Posts: 2,431
    edited April 2010

    I had more trouble with the Xeloda than the Tykerb.  I am now off Xeloda but still on 1500 mg. daily of Tykerb.  My toes are better, but still hurt.  I am going to break down and go to a podiatrist on Thursday.  Scared to go!  I am afraid whatever they do to me is going to hurt!  What a wussy baby I am! 

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited April 2010

    Faith - I am glad you are going to a podiatrist....this stuff is painful and the less we suffer the better :>  You are not a wuss at all.  If they have to do anything they will numb it....let us know how it goes!

    jneumann - tykerb is definitely better than chemo, but I do have lots of SE there is no denying that...LOL!!!   I stopped xeloda, so now I am on herceptin and tykerb.  I made a post here called tykerb and herceptin - double whammy or something like that on this forum.....I listed all my SE there....because while they are small SE and much better than chemo they are still things we have to deal with and can be difficult.  My worst problems with the tykerb is the diarrhea and pimples...yuck!!!

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  • Faith316
    Faith316 Member Posts: 2,431
    edited April 2010

    chainsawz -- Tykerb and pimples --- me, too!  In fact, today at my appointment with my oncologist, I got a refill prescription for some more Clindamycin.  I use that stuff every night after I wash my face at bedtime.  It was weird, about a month after I started taking Tykerb and Xeloda, my face broke out.  I used the clindamycin for 3 or 4 weeks and it went away.  The next 6 months, no breakouts.  Then, it came back and this time has lasted for about 2 months already and still going.  Seems weird that it would happen at the beginning, then go away, and then come back months later.  But, I have read several places that people who have the Tykerb rash have a better response to the drug.  So, if that is true, then I should be good!

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited April 2010

    I use the clindamycin like it's going out of style...LOL!!!   I go thru weird periods when I don't have any, and then suddenly I have them everywhere.  I never looked in a mirror much before, but now I carry one around to check my face because when I least expect it something huge will pop up on my face....and I mean huge!!   I try to not let them sneak up on me :>

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  • jneumann
    jneumann Member Posts: 67
    edited April 2010

    Lisa - thank God I don't have the pimples, I think I had one and sometimes I can see it starting to come back but it goes away.  We are going to try 1500 mg of tykerb per day and see how that goes with the diarrhea!  Keeping my fingers crossed as I have thru August with Xeloda/Tykerb and I hope it is working and I won't need breaks from getting sick.  I do have my scans in about 3 weeks and I am anxious to see if this is working. 

    PIMPLES!  I feel like I'm in high school again!  Oh no, will I get a date to the prom!  Haha!

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  • Faith316
    Faith316 Member Posts: 2,431
    edited April 2010

    OK.  Here's the scoop.  I did go to the podiatrist today regarding ingrown toenails compliments of Xeloda and Tykerb.  I have put it off for a long time because I was such a wuss and scared it was going to be painful.  It was not at all.  She asked me if I wanted her to numb me with an injection or just freeze it with spray.  She said the spray would not numb me as much as an injection but it should numb it enough.  I chose the spray and it did not hurt me at all when she cut the ingrown part out.  One big toe had the problem on both sides of the nail and the other big toe on only one side of it.  She was done in 5 minutes and put on some Neosporin and a couple of bandaids.

    Long story short -- I worried for nothing.  It did not hurt at all.  I should have gone months ago.  I have been suffering with this problem off and on (mostly on!!) since last summer.  She said I should probable be good to go for about 3 or 4 months and then I will most likely need to have it done again.  But, now that I know it is no big deal, I won't put it off.

    Hope this helps others who may also be suffering with this problem.  Go and see a podiatrist.  It was no big deal.  (What a wuss I was!!!  You would think that after all I have been through in the past 2 years, I wouldn't have worried about this but my toes were SO sore that the thought of somebody messing with them -- possibly sticking a needle in them!! YIKES!! -- made me put off going.  Now I feel silly for being so scared about it.  Glad I finally went.)

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  • jneumann
    jneumann Member Posts: 67
    edited May 2010

    Too funny, Faith.  But I did the same thing with a lesion I had on my leg.  My sister told me this horror story of how when my mom had lesions she had to hold her down as they scraped the dried blood off the lesions.  You can imagine my panic - for a whole week!  When it came down to it, the wound clinic PA didn't even touch it except to measure it and put medicine on it because she saw how scared I was.  I told her why I was scared and she laughed and said to never listen to those stories!  I wanted to kill my sister but I remember her telling me the horror stories of what was going to happen when I got my braces off when we were kids!  Sisters!

    Glad everything went ok, I have ingrown toe nails too just the big toes.  I have learned how to trim them myself to keep them from hurting but must admit I have a great pedicurist and see her when I can and am off chemo.

    Joann

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  • butchboxer
    butchboxer Member Posts: 6
    edited May 2010

    Began Tykerb August 2009.  I had rash all over my body and legs from Tykerb (was not on Xeloda).  I had to discontinue temporarily.  The rash cleared and didn't come back afterwards.  Both my big toes were extremely inflamed, puss, and hurt.  I was put on antibiotics and it cleared up.  I just started getting cracks on my heels that are very sore.  Just started treating with Burts Bee's foot lotion and am waiting to see how that works.  Also get cracks on the tips of my fingers which I treat with polysporin.  Just started getting rash (acne) on my face again.  Using clyndimycin cream.

      

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  • Faith316
    Faith316 Member Posts: 2,431
    edited May 2010

    Hands, feet, toes, acne.  Yep.  Exactly what I had.  So pretty!!!!  Now that I am off Xeloda, the hands and feet are better but the acne is worse.  (Stll on Tykerb.) 

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  • jneumann
    jneumann Member Posts: 67
    edited May 2010

    Just got my first finger nail infection, was lucky my wound PA was able to drain it and put antibiotics on it, slow healing though.  My fingers are always pruny like I just soaked in the tub.  Any ideas?  Will try putting polysporin on my hands and nails tonight.

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  • krcll
    krcll Member Posts: 343
    edited June 2010

    Faith- I was just wondering how your toes are doing now, a month after your podiatrist visit? My toe has been red and swollen (and hurting) for 2 months and the onc says it isn't an ingrown toenail and that going to the podiatrist woundn't help. So I would love to know if things cleared up for you....(I am such a wuss and am too scared to go unless you tell me it has worked over the longterm)

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  • Faith316
    Faith316 Member Posts: 2,431
    edited June 2010

    I has made a BIG difference!  SO much better.  Make an appointment.  You will be glad you did.  I was a big wuss and put off going for months and months because I thought it would hurt.  But, it did not hurt at all.  She sprayed a numbing spray that froze it and it didn't hurt at all and she was done in like 5 minutes.  She said I'd probably have to have it repeated every  3  months or so but after finding out that it was no big deal, I won't dread going back. 

    Make the call.  You'll be glad you did and will feel so much better.  Let me know how it goes.

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  • jbsica
    jbsica Member Posts: 1
    edited July 2010

    My wound care nurse told me to drink "Smart water", she had me drink 33 oz a day. My last trip to the doctor my poss was up to 4.

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