Anyone have any experience with Tykerb,Lapatinib or Capecitibin?

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Christine_Brown
Christine_Brown Member Posts: 5
edited June 2014 in IBC (Inflammatory Breast Cancer)
Anyone have any experience with Tykerb,Lapatinib or Capecitibin?
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  • Christine_Brown
    Christine_Brown Member Posts: 5
    edited September 2009

    Hi,

    I was just told by my onc that I may be put on Tykerb and an oral chemo pill together. She said the oral chemo pill doesn't cause hair loss and is milder. Is that true from anyone's actual experience?

    I have a recurrence of IBC which I've heard is how they refer to any new cancer after IBC.  It is supposedly odd as it appeared as a small 1.5 cm mass in the axilla on the opposite side to my original mastectomy. The onc had believed it was highly unlikely that it would return there as opposed to in an organ. I think a cell lay dormant and after Herceptin stopped and with the added stress of everyday life, got aggravated. Fortunately it is small and will be gone when I have all the lymph nodes removed soon. I was just hoping someone may have had experience with the follow up drugs.

    Any info or personal accounts are greatly appreciated as always. 

    Love and thanks,

    Christine

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

    I have been on Tykerb (which is lapatinib) and Xeloda (which is capecitibin) since July 10.  I take Tykerb every single morning on an empty stomach.  I take Xeloda with food in the morning and in the evening -- 2 weeks on, 1 week off.  No hair loss.  No nausea.  The main side effects I am having are LOTS of diarrhea and foot and hand syndrome which is causing lots of little cuts on my hands and feet, red skin, swollen hands, blisters on my feet and numbness and tingling in my hands and lower arms up to my elbows.  This HF Syndrome is actually quite painful, but if this chemo can make me live, I can handle just about anything.

    Both drugs are oral chemos.  They have actually been a whole lot easier to take than some of the other chemos I have taken (Adriamycin, Cytoxin, Taxol, Herceptin).  These two drugs are also working really well for me.  After the first day, I could already see an improvement in my IBC rash.  Really.  At first my significant other thought it was just wishful thinking on my part, but after a couple of days, even he couldn't deny that it was decreasing day by day.  My rash was totally gone after 3 weeks.   I will stay on these chemos for 3 more months before I have mx.  I am hoping my HF syndrome doesn't continue to get worse, but like I said, if I have to put up with sore hands and feet for awhile to stay alive, then it is a no brainer.

    I hope you have a good result with it as well.  

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  • Marsha56
    Marsha56 Member Posts: 86
    edited September 2009

    I did the orginal study and sent my data to the FDA for fast approval for Tykerb also met the woman who discover this drug. No hair loss some nausea, but did had sore hands an feet but "Bag Balm" worked grat on that. This chemo cleared all of my liver mets four years ago with no new tumor's!!!!! Hope this helped.

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  • Christine_Brown
    Christine_Brown Member Posts: 5
    edited September 2009

    Hello again,

    Thanks so much for the very thorough info Gg and Faith and the very uplifting news Marsha. My hubby and I read your responses and feel even better. I'll tolerate HF syndrome if the results are as great as Marsha's for sure. Keeping my hair is a bonus too.

     Thanks for the lift!!

    Love,

    Christine

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