How long are you taking Herceptin?

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EGAL
EGAL Member Posts: 539
edited June 2014 in HER2+ (Positive) Breast Cancer
How long are you taking Herceptin?
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  • EGAL
    EGAL Member Posts: 539
    edited February 2008
    I am scheduled for 36 weekly treatments (6 or 8 weekly then 2 weeks off) and I have only 9 left.  I asked my onco how does he know how many treatments to give and he said this was the
    "norm".  He said there is no long term statistics on Stage 3'ers.  It was just in the last few years that it was given to us before that it was only given to Stage IV 'ers.  I read that some gals are on it for two or more years.  I would rather continue than risk mets.  Any thoughts?
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  • mimi1030
    mimi1030 Member Posts: 700
    edited February 2008

    I think the people that get it for years are those who are stage IV...my mom is stage IV and will be on it indefinitely now.  I think standard treatment is 1 year for everyone else.  I am not too sure, but I think that is how it goes.  Some others will be by to clarify though.

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  • nagem
    nagem Member Posts: 353
    edited February 2008

    I believe the standard protocol is a year's worth of Herceptin for anyone who doesn't already have distant mets. I know what you mean about wishing you could take it longer to prevent them. But if it hasn't gotten rid of all the stray cells within a year, it probably isn't effective for your variant of her2neu. So we just have to cross our fingers once we're done.

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  • nagem
    nagem Member Posts: 353
    edited February 2008

    I believe the standard protocol is a year's worth of Herceptin for anyone who doesn't already have distant mets. I know what you mean about wishing you could take it longer to prevent them. But if it hasn't gotten rid of all the stray cells within a year, it probably isn't effective for your variant of her2neu. So we just have to cross our fingers once we're done.

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  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited March 2008

    Hi EGAL, I am IIIc too. I really wanted it 2 years. But I got one. I know that Linda (from our III thread) was lucky to get 2 years.  Lets hope that one year does the trick!!

    Janis

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  • EGAL
    EGAL Member Posts: 539
    edited March 2008

    Thanks for everyone's response.  I think I will ask onco if a once a month "maintenance" treatment would be warranted.  I doubt it, but I am getting nervous now as he said "we have done all we can, and I'll just watch you very carefully".  Seems like I just have to wait for the other shoe to drop and deal with mets. 

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  • Annaanne
    Annaanne Member Posts: 190
    edited March 2008

    Hi EGAL

    What I've heard from my doc, who checked with other oncs who ran the first herceptin trials, is that the two year herceptin trial is not showing results that are better than one year (that was a year and a half ago, when I was at the end of my year).  

    If you want to continue longer than a year, by the way, your insurance may refuse.  In that case, you can appeal to Genentech for free drugs.  

    But everything I've heard is that one year is plenty, and in fact it may turn out that a shorter period is sufficient.  There is more info about this on the Her2 Support Web site.

    Annaanne 

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  • Chelee
    Chelee Member Posts: 513
    edited March 2008

    It is usually one year but I do know some women that got two years.  That's what I wanted.  The stage IV's get to stay on it.

    I'm a stage III'er with Her2, and 5 positive nodes and I really WANTED to continue pass the one year mark since I'm high risk.  I even went up to a larger cancer center in hopes my 2nd opinion onc would say OK.  If she did then my onc said she would ok it.  But they said no as two years is not proving to be any better.  But I felt like since my ECHO's were great and I was willing to take the risk of contining.  But they just said I've done all I can and they will watch me.  Its a very scary feeling when your off everything.  What your feeling "Egal" is very normal.  Hang in there...I'm passed my two year mark and so far knock on wood I'm NED. 

    Chelee

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  • Denny123
    Denny123 Member Posts: 1,886
    edited March 2008

    I was stage 4 from the beginning, and have been on Herceptin for 4 years.  I will get Herceptin for life, as it has kept my liver mets in remission now for over 3 1/2 years.  My heart ejection fraction is very good and has even risen after my last Echo.

    Denise

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