ER/PR Negative Her2+: will Tykerb work for me?

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KeepingFaith69
KeepingFaith69 Member Posts: 508
edited June 2014 in HER2+ (Positive) Breast Cancer

Hi,

I had a recurrence after system therapy (and still taking Herceptin).  This was removed with surgery.  No evidence of spread - THANK YOU GOD.

Herceptin has been halted and no further treatment has been considered "as there is nothing to measure'.

I have been doing research about Tykerb and it is used for women who are hormone positive.

Is there anyone out there who is Hormone negative, and who is receiving Tykerb???

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  • Lauriesh
    Lauriesh Member Posts: 692
    edited December 2011

    Hi, tykerb is also used for er/pr-. I am stage 4 NED, after mets to my liver. I am er/pr-. I was taking Herceptin and tykerb (am taking a break now for a vaccine trial) and will go back on this combination indefinintely in Feb. 

    Where was your reccurance?   I think I would push for a year of Herceptin and tykerb, as there are studies that the two work together. Just because you recurred on Herceptin does not mean that it could not work for you in the future combined with another drug, such as tykerb.

    Laurie

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  • KeepingFaith69
    KeepingFaith69 Member Posts: 508
    edited December 2011

    Hi Thanks for that. 

    I'll keep that up my sleeve when I next see my Oncologist.

    The recurrence was just under the mastectomy scar, in the same vicinity as the original nodule. 

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  • Faith316
    Faith316 Member Posts: 2,431
    edited December 2011

    I'm not sure where you got that Tykerb is only for hormone positive women.  I am hormone negative and am on Tykerb.  (I wrote about my experience in another of your threads a day or two ago -- but in case you don't remember, here is my story.)

    Originally IDC and DCIS.  Lumpectomy, node dissection, 2/8 malignant.  ER-PR-HER2+, Grade 3.  AC x 4, 12 weekly Taxol with concurrent Herceptin.  Then, dx with IBC while still on Herceptin and in the midst of 30 rads tx.  Stopped Herceptin (had been on 9 months by then), switched to Xeloda and Tykerb for 6 months.  Stopped Xeloda, uni-mx and another node dissection.  Stayed on Tykerb and have now been on it for 2-1/2 years and NED!

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  • KeepingFaith69
    KeepingFaith69 Member Posts: 508
    edited December 2011

    I am sooooo PLEASED, Thank you Faith316.

    I have been trawling the net and the info I found suggested Hormone positive.

    I LOVE your story, it gives me hope and faith.

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  • Faith316
    Faith316 Member Posts: 2,431
    edited December 2011

    Maybe you are confusing Tykerb with Tamoxifen.  Tamoxifen IS for hormone positive breast cancer only.

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  • scuttlers
    scuttlers Member Posts: 1,658
    edited December 2011

    Also had progression on Herceptin. Went to MDA and after more aggressive chemo, surgery, and chemo met NED. On Tykerb and Herceptin since April 2010 and is keeping me NED so far. MDA oncologist says to stay on this at least 5 years or until it stops working.

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  • KeepingFaith69
    KeepingFaith69 Member Posts: 508
    edited December 2011

    Hi Scuttlers, thank you : )

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  • mistral1960
    mistral1960 Member Posts: 3
    edited March 2012

    Tykerb is primarily used for her2 positive cancer. I am ER/PR negative and her2 positive and currently on a neoadjuvent drug trial combo of Tykerb and Herceptin. So far, I am responding very well to treatment. The huge tumor (+7 cm)  I had prior to treatment is no longer palpable after merely 6 weeks of treatment. 

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  • KeepingFaith69
    KeepingFaith69 Member Posts: 508
    edited December 2012

    I have possible mets and have been told that tykerb/xeloda is my next cocktail.

    Hopefully I won't need it.

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