Tykerb and Xeloda, give me the low down, please!!

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lorieg
lorieg Member Posts: 802
edited June 2014 in HER2+ (Positive) Breast Cancer
Tykerb and Xeloda, give me the low down, please!!
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  • lorieg
    lorieg Member Posts: 802
    edited December 2009

    I am apparently a "herceptin non-responder" and will be starting Tykerb and Xeloda in the next few days.  I know the big side effects of Tykerb are diarrhea and rash.  Anyone not have these issues?  Is the diarrhea crampy, constant, worse as treatment progresses.  Is the rash itchy, widespread, constant?

     If you have experience with these agents, please share!

    Thanks so much!

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  • ElaineD
    ElaineD Member Posts: 2,265
    edited December 2009

    The side effects to both drugs are the same-so be prepared to have a doubling of your symptoms. As to the rash-it wasn't particularly itchy-but I was literally covered from head to toe!

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited December 2009

    I am on tykerb now, but only took xeloda for one week so I can only speak to the SE for tykerb.  There are lots.  I listed all mine and the remedies in a thread on this forum named Herceptin and Tykerb - double whammy!   I have to say, there are lots of side effects but they are nothing compared to the TCH I did last year!  I work full time and do everything I normally do....I just have to live a little differently.  The worst is the diarrhea also known as the poop soup...LOL!!!   I just take an immodium every day to help with that problem.  I also had a bad rash, but is seems to have resolved...for now.  It did not itch at all. 

    I do know many who are on xeloda have hand foot syndrome, but they moisturize tons to help with that. 

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  • lovetosail
    lovetosail Member Posts: 544
    edited December 2009

    Hey lorieg - I am on Tykerb.  I have the rash - not itchy, just kind of ugly.  I also have diarrhea, but I can control it with as little as 1/2 an immodium.  Try starting with a low dose of immodium and see if that will work - you can always take more if you get another bout!  Taking too much at once can swing you the other direction to constipation.  Also, try to note if you have diet triggers - for me milk seems to be one, and as you might expect coffee.

    How about the size of the damn Tykerb pills - good god a horse would choke on those!

    Best of luck with your new treatment regime!

    Sue

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited December 2009

    LOL Sue!!!  I agree - and why do some pills need to be so large?  I thought the tykerb pills were big until I had to start taking calcium - that pill is the size of a shoe!!  

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  • lorieg
    lorieg Member Posts: 802
    edited December 2009

    Thanks everyone.  I can't wait to start!!  I have the pills and could start tomorrow.  Is it bad if I wait one more day??  I don't think I want to think about it on Christmas!  I have my Immodium ready to go and am really dreading the rash/acne.  I have always had a nice complexion.  Damn cancer!! 

    I have not opened the Tykerb bottle but by the size of the bottle itself I figured they were horse pills.  Can't wait.  Ugh!  I know people who can't swallow pills.  What the heck would they do?  :-)

    Thanks again, and Merry Christmas!

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  • Faith316
    Faith316 Member Posts: 2,431
    edited December 2009

    Not everyone gets the rash.  I have been on Tykerb for 6 months --- no rash.  Not everyone gets the acne either.  I had about a two or three week period where I had a few breakouts and then it went away.  The diarrhea for me gradually has lessened.  At first it was over and over and over again every day.  Now, some days I have no bouts of it at all.  (I am also on Xeloda and that causes it, too.)  I have used Immodium only twice while on these drugs.  It makes my stomach hurt and I'd rather have diarrhea than take it.

    Tykerb and Xeloda have actually been pretty easy chemo for me except for the hand/foot syndrome and I think that is caused more from the Xeloda than the Tykerb.

    Good luck and Merry Christmas!

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  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited December 2009

    I have been on Tykerb for almost a year now.    I am not on Xeloda so I can only speak to the side effects of Tykerb.  The rash for me didn't show up until about 6 months or so into treatment.  It primarly only effects my arms... looks kinda like big red pimples (yuck).  I had the diarrhea at the start but it resolved pretty quick and hasn't ever come back.   My most annoying problem is that my fingertips split open and are really painful.  My fingernails are already non existent from Herceptin and now with Tykerb all along the side of my nails gets really irritated.  I have had to have two surgeries on in grown toenails too. 

    Tykerb isn't horrible but certainly not as easy as Herceptin.

    Best of luck to you!!

    Jennifer 

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  • lorieg
    lorieg Member Posts: 802
    edited January 2010

    Thanks for the responses.  I am on day 6 and so far I feel better than I have since before I was diagnosed although I realize I may be too early for the side effects.  Other than the skin spillting open on my fingertips, I am fine.  I am waiting for the diarrhea and rash to hit!  I am just hoping it works since I did not have a good response to A/C or Taxol/Herceptin.

     Thanks again!

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  • Miriam-H
    Miriam-H Member Posts: 1
    edited January 2010
    I started on a Tykerb and Xeloda program about five weeks ago. After two weeks I had to stop because of the diarrea and mouth sores. Long story short my husband saw that something was wrong and called the ambulance. I was in a comma for three days and know nothing of going to the emergency room and hospital. My ammonia count was 150. If it wasn't for my husbands quick action I wouldn't be here today. I had just come from the clinc that day where all they want to do is hydrate when something is wrong.
    So have someone watch you closely. If you become disoriented go to the hospital ASAP.


    Miriam
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  • Emme
    Emme Member Posts: 205
    edited January 2010

    Hi,

    I just started Taxol weekly tx with Tykerb daily last Thursday on New Year's Eve.  I immediately got a sunburned look on my chest and shoulders.  That developed into little white heads on my head face neck and shoulders.  My head itches! The worst of my SE was constipation.  My Onc was floored.  He was certainly surprised when I was bound up.  I ended up in the hospital sunday with it.  Thank goodness I am cleaned out now...and bein very careful and keeping miralax on hand!

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  • lorieg
    lorieg Member Posts: 802
    edited January 2010

    Wow, I guess everyone is different!  Miriam and Emme, hope you are both feeling better!  So far my only real side effect consists of cuts on the ends of all my fingers despite constant lotion and sleeping with aquaphor and goves on my hands.  Ouch, but I will happily take the cuts over hospitalization.  I was expecting to have a rash and/or diarrhea by now.

    Lori 

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  • lopsided_blogger
    lopsided_blogger Member Posts: 100
    edited January 2010

    Hi Lori,

    My fingertips split with Herceptin and with the cold/dry weather. I put Bag Balm on the cuts and then covered them with finger cots (like little plastic condoms for your fingers) that you get at the drug store.

    I used Bag Balm on my little guy for his diaper rash when nothing else would work. I think they make it for use on cow's udders, but a lot of folks use it for diaper rash and healing bad skin issues. Anyway, sounds crazy, but worked great for me. I found it down the pet aisle in Walmart.

    Take Care,

    lopsided blogger

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

    I also get splits on my fingertips and heels.  I carry around a tube of super glue and I squirt some on them when they pop up - it helps them not hurt so much :>  I'll try the bag balm, too! 

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