Anyone on Herceptin over 2 years?

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valerieinmichigan
valerieinmichigan Member Posts: 3
edited June 2014 in HER2+ (Positive) Breast Cancer

Interested in hearing from any long term Herceptin users.   What is your experience and have any of you had adverse effects such as Herceptin losing its effectiveness; change in status from Her2+ to - ; or other adverse effects.

I have heard that some women who were in the original trials with Dr. Slamon have taken it over 16 years.   Are there any women out there from those original trials?

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  • orange1
    orange1 Member Posts: 930
    edited December 2008

    The wife of a business associate of mine has been on it for 11 years and still doing well.

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  • Mocity
    Mocity Member Posts: 451
    edited December 2008

    I am curious why most only get it for a year?????

    I am doing 12 weeks (weekly) Taxol + Herceptin and then Herceptin every 3 weeks for a year.  One year seems the "norm"?  How do we know a year is all that is needed?

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  • jan125
    jan125 Member Posts: 411
    edited December 2008

    women with mets get it forever. I will be 3 years this May, so far so good

    Jan

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  • deem
    deem Member Posts: 8
    edited December 2008

    Good morning ladies.

    I have not posted in quite a while but seen this one and wanted to response.  I was dx with bone mets almost 7 years ago.  I have been on herception since January 2002.  And my doctor has told me that I will get it forever (which I hope is for a very long time!)  My heart has continue to be healthy but the running nose drives me crazy!!  Small price to pay. 

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  • Denny123
    Denny123 Member Posts: 1,886
    edited January 2009

    I have been on Herceptin for 5 years and it has kept my liver mets in remission for 4 1/2 years.

    No SE here and my heart is fine.  I will be on it for life.

     Denise

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  • sparkie
    sparkie Member Posts: 23
    edited February 2009

    My daughter has been on Herceptin for several years.  She's now switching to Tykerb (with Arimidex) because she has brain mets and Tykerb can cross the blood/brain barrier.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2009

    Sparkie,

    Your daughter might want to ask about ADDING tykerb to her treatment.  Lately it seems lots of oncs are adding tykerb WITH herceptin.  Herceptin works on the outside of the cancer cells and tykerb works inside the cells.  We added tykerb to my herceptin/faslodex cocktail just a couple of months ago.  Will scan soon to see how this is working.

    I've been on herceptin for over 5 years!

    Hugs,

    Bethie

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  • drnix
    drnix Member Posts: 10
    edited April 2009

    I have been on Herceptin since first approved in my area - so first treatment was 12/31/98.  I and oncologist have been watching a couple areas on the skin.  I do intend to pursue other treatment.  Nervous waiting so long.

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  • maryannecb
    maryannecb Member Posts: 1,453
    edited April 2009

    Denny123....if you dont mind answering are you ERpositive or negative? Great to see herceptin working for so many years!

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  • drnix
    drnix Member Posts: 10
    edited April 2009

     I was and still am ER negative.  And you?

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  • maryannecb
    maryannecb Member Posts: 1,453
    edited April 2009

    I am ER negative....almost 4 years from diagnosis, a little over 2 years from last herceptin. and continuing NED...still worry a bit about progression though I know most recur within the first 2 yearsof finishing Herceptin. But it is good to hear of disease progression that is doing so well with H. Being ER negative limits the options so much.

    Hope to continue reading your success story for many years!

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  • juniper
    juniper Member Posts: 110
    edited April 2009

    I have been on herceptin for almost two years.  I will take it for life.  My MUGA scans have been fine.

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  • Denny123
    Denny123 Member Posts: 1,886
    edited April 2009

    Maryanncb,

    I am ER+, Pr -.

    Thanks,

    Denise

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  • nutrachris
    nutrachris Member Posts: 11
    edited April 2009

    I first started treatment with Herceptin in August 1999. In November 2007 I discontinued it after talking to several breast cancer researchers. I have taken no chemo since then but am closely monitored using the Serum HER2 test.

    Latest tests show NED

    Hugs

    Christine

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