anyone taking tykerb?

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pondfrogs
pondfrogs Member Posts: 91
edited June 2014 in Managing Side Effects of Breast Cancer and Its Treatment
anyone taking tykerb?
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  • pondfrogs
    pondfrogs Member Posts: 91
    edited June 2008

    I recently started a study taking tykerb for non-mets. is anyone on this drug (mets or not)?

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  • Xantippe
    Xantippe Member Posts: 9
    edited June 2008

    I am interested in your study, what is it called and who is conducting it?

    You can also post your question on the HER2+ website: www.her2support.org

    When starting treatment a year ago I was offered a trial which combined Herceptin and Tykerb for early stage BC. I declined the offer, and often wonder if I made the right decision.

    Keep us posted on how you are doing on the drug. Thanks!

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  • abbyglp
    abbyglp Member Posts: 417
    edited June 2008

    Jen, I have mets to spine and I started taking tykerb again today. I tried it for 4 days a couple of weeks ago and because of the side effects my onc stopped it until my biopsy came back. My original dx was ER+PR+HER2+, but I found out today that my spine mets are ER-, So my onc took me off aromasin and replaced it with tykerb. he said I will start out with 4 aday and adjust the dose to lessen the side effects. Are you expieriencing any?I see you are ER-, have they put you on anything else with the tykerb? hugs abby

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  • pondfrogs
    pondfrogs Member Posts: 91
    edited June 2008

    hi,

    xantippe, the study I am on is RC0639 from the mayo clinic for pt's with her2+. I'm not sure when the study was started but it does sound a bit like the one you were offered.  I took 4 cycles of a/c tx's then onto taxol/herceptin.  I started the tykerb with the taxol/herceptin and will continue it (tykerb) for a yr. I started out by taking 1000mg of tykerb daily (4 tabs) and after 2 weeks had lost 15# and my potassium dropped low...I was so sick with diarrhea and was hardly eating/drinking. weakness like you wouldn't believe. so they have taken me off the tykerb for 3 weeks. I am to re-start it next week at 750mg daily. my doctor told me this week that they (the study people) realized that the 1000mg was making too many people sick so they are starting everyone in the study out at the 750mg now. I sure hope that this dose is tolerable as I really want to continue with the study, but I tell ya not feeling like I did...I could bearly function. I hope you do well on it abby, I look forward too hearing how you do. hopefully our journey will be a good oneSmile

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