Need some advice

kerry
kerry Member Posts: 1,313 Member
edited March 2014 in Colorectal Cancer #1
Hi guys,

Well as most of you know, I am on Xeloda and have been for 7 months. Now I am suffering side effects that are awful - these side effects effect my hands and feet. Especially my BIG toes. I am experiencing pain, pussing and loss of contact of my nail with nail bed. It is driving me CRAZY! My doctor has taken me off of my cancer treatment for 2 weeks to give my toes a chance to heal.... they are not yet.

Has anyone else on Xeloda had this experience??? I have searched everywhere for advice and found none. My Oncologist at MD Anderson says that I cannot take any oral meds to remedy the situation right now......frustration.

Kerry - whose feet are a terrible mess??!!

Comments

  • crazylady
    crazylady Member Posts: 543 Member
    #2
    Hi Kerry,
    I'm so sorry that your feet are a mess. I don't really have any advice, but wanted you to know that you are not alone. I was on xeloda from August 2004 until the beginning of February 2005. My feet, especially my toes drove me crazy and continue to do so. I didn't have the nail beds come up. My toenails grew in. The podiatrist and I became great friends. One of them has grown in again and I have to make another appointment. Yuck! The only thing that helped at all was taking an extra week off of xeloda and lowering the dosage that I was on. It's much better since I've been off of it for 5 months, but obviously still in my system. I'm sorry that I can't offer you any solutions!
    Take care,
    Jamie
  • kerry
    kerry Member Posts: 1,313 Member
    #3
    crazylady said:

    Hi Kerry,
    I'm so sorry that your feet are a mess. I don't really have any advice, but wanted you to know that you are not alone. I was on xeloda from August 2004 until the beginning of February 2005. My feet, especially my toes drove me crazy and continue to do so. I didn't have the nail beds come up. My toenails grew in. The podiatrist and I became great friends. One of them has grown in again and I have to make another appointment. Yuck! The only thing that helped at all was taking an extra week off of xeloda and lowering the dosage that I was on. It's much better since I've been off of it for 5 months, but obviously still in my system. I'm sorry that I can't offer you any solutions!
    Take care,
    Jamie

    thanks Jamie, This is so frustrating. I have been tolerating this treatment so well until now with this Toe problem and it is driving me crazy. I guess I also will find a podiatrist that will become my very best friend!!

    Thanks for the advice.

    Kerry
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #4
    kerry said:

    thanks Jamie, This is so frustrating. I have been tolerating this treatment so well until now with this Toe problem and it is driving me crazy. I guess I also will find a podiatrist that will become my very best friend!!

    Thanks for the advice.

    Kerry

    Hiya Kerry....sorry your tootsies are giving you such a hard time. I am wondering if Aloe Vera might give you some relief. We use it here and find it incredibly soothing for all sorts of ailments. Jen actually grows the stuff. We break off a leaf....cut it down the middle and apply the "gel" that is inside it. Most nurseries sell the plant....at least they do here in OZ.
    Just a thought sweetie.......luv Ross n Jen
  • tkd3g
    tkd3g Member Posts: 767
    #5
    Hi Kerry.

    So sorry for the feet problems. What struck me was the Big Toe pain. I was on oxaliplatin and 5Fu/Luek. Now granted I was only on for a couple of cycles, but I still have this pain in my big toes. Weirdest thing. And my hips and pelvic area are shot. I can't even stretch those areas out anywhere like I used to.

    All hail Chemo and Radiation. Hopefully, we won't live with the side effects for ever.

    Barb (who can't kick hard anymore ( martial arts) - cause my toe hurts!) How lame is that?
  • jsabol
    jsabol Member Posts: 1,145 Member
    #6
    Hi Kerry,
    I'm sorry to hear about the side effects; this sounds like really painful stuff. I would second the notion of seeing a podiatrist, but see one who has a broader experience than just cutting toe nails. My mother in law has terrible foot problems from complications of diabetes. Her podiatrist, who is also a foot surgeon, has consistently been the one to catch some little change and prevent another flare up of her symptoms, as well as having all sorts of tricks to protect some very painful areas on her toes. I would also wonder if you may have a fungal infection superimposed on the side effects/infection. Toenails and nail beds are known for that; there may be some topical things that could help. Hope you can get some relief fast.
    Regards, Judy
  • JKendall
    JKendall Member Posts: 186
    #7
    Hey Kerry...sorry I can't give you any real advice on this one, but I hope it gets better! I guess hot springs (are there hot springs near "Hippie Hollow") and cold beer (the beer is for the tongue...not the toes) are probably out of the question, huh?

    Jimmy
  • kerry
    kerry Member Posts: 1,313 Member
    #8
    JKendall said:

    Hey Kerry...sorry I can't give you any real advice on this one, but I hope it gets better! I guess hot springs (are there hot springs near "Hippie Hollow") and cold beer (the beer is for the tongue...not the toes) are probably out of the question, huh?

    Jimmy

    Jimmy,

    Most people here don't know about Hippie Hollow!!! I don't know if there are hot springs there, but I hear things get pretty hot!!

    Thanks for the sympathy. It is getting to be a really big pain in the "foot". No relief yet, I'm going to see a podiatrist next week.

    Kerry
  • CAMaura
    CAMaura Member Posts: 719 Member
    #9
    kerry said:

    Jimmy,

    Most people here don't know about Hippie Hollow!!! I don't know if there are hot springs there, but I hear things get pretty hot!!

    Thanks for the sympathy. It is getting to be a really big pain in the "foot". No relief yet, I'm going to see a podiatrist next week.

    Kerry

    Kerry,

    Gosh, how frustrating...and I remember your "Sandal" e-mail. Best of luck at the podiastrist. Side effects are the strangest of things....the unknowns that docs don't alsways find during the clinincal trials.

    Wishing you the best,
    Maura
  • kerry
    kerry Member Posts: 1,313 Member
    #10
    CAMaura said:

    Kerry,

    Gosh, how frustrating...and I remember your "Sandal" e-mail. Best of luck at the podiastrist. Side effects are the strangest of things....the unknowns that docs don't alsways find during the clinincal trials.

    Wishing you the best,
    Maura

    Maura,

    You are right about how frustrating. I was laughing about my sandal email the other day when I was looking at how ugly my toes have become. And it is summer and the toes show!!! Hopefully something will turn up to help me. Hey, its certainly not the end of the world....

    See you in October!

    Kerry
  • scouty
    scouty Member Posts: 1,965 Member
    #11
    Kerry,

    I never liked the noise of sandals anyway. That obnoxious flip/flop sound. Get those bad boys out in the sun for some vitamin D. I'm sorry I can't offer anymore then that. But do know that I love you just as any great friend does. Hang in there and this too shall pass.

    I also think you should run around your yard butt naked in a pouring rain. It might not help your feet, but it sure feeds your soul.

    Lisa P. who did that for the first time in her 50 years of life recently and it was simply awesome.
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #12
    scouty said:

    Kerry,

    I never liked the noise of sandals anyway. That obnoxious flip/flop sound. Get those bad boys out in the sun for some vitamin D. I'm sorry I can't offer anymore then that. But do know that I love you just as any great friend does. Hang in there and this too shall pass.

    I also think you should run around your yard butt naked in a pouring rain. It might not help your feet, but it sure feeds your soul.

    Lisa P. who did that for the first time in her 50 years of life recently and it was simply awesome.

    Re; running butt naked Kerry........I think if you live in the middle of town it would be wise to drive to the secluded country.
    You want I should send my "teddy bear" over for you to use??? lol!

    can't help myself...bad habits babe!
  • kerry
    kerry Member Posts: 1,313 Member
    #13
    kangatoo said:

    Re; running butt naked Kerry........I think if you live in the middle of town it would be wise to drive to the secluded country.
    You want I should send my "teddy bear" over for you to use??? lol!

    can't help myself...bad habits babe!

    I have never run naked in the rain, but you know, at this stage of my life and knowing how short life is, it doesn't sound so bad - trouble is, it hasn't rained here in 34 days!!! I might be running in the dust, which isn't all that bad, if I kick up enough it will cover my bum!!

    Maybe us gals should start our own COLONDAR!!!??

    Kerry
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #14
    kerry said:

    I have never run naked in the rain, but you know, at this stage of my life and knowing how short life is, it doesn't sound so bad - trouble is, it hasn't rained here in 34 days!!! I might be running in the dust, which isn't all that bad, if I kick up enough it will cover my bum!!

    Maybe us gals should start our own COLONDAR!!!??

    Kerry

    Your own colander??? You gals gunna send out "samples" first?????
  • bsrules
    bsrules Member Posts: 296
    #15
    Kerry,

    Hang in there!!!! I am pulling for you!!!! Good luck with the foot Dr. There is nothing worse then trying to get around and your feet are hurting!!!! I just want you to kown that I am pulling for you!!!!!

    Best Wishes and special prayers for Happy Feet!!!!

    Love to my special friend

    Sue
  • rejoyous
    rejoyous Member Posts: 259
    #16
    Hi Kerry,

    I wasn't on Xeloda, but just wanted to send my sympathy. Sounds difficult!! My FOLFOX regime left me with a lot of neuropathy that lingers still--it feels like I'm walking on sand all the time. I love the advice on this board, though, don't you? Teddy bears, Hippie hollow, dancing naked in the rain...there sure are enough extracurricular activities to distract us, even if our feet are unchanged.

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