Question for long term Herceptin users

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Denny123
Denny123 Member Posts: 1,886
edited June 2014 in HER2+ (Positive) Breast Cancer

I have been on Herceptin for 6 1/2 years and have been blessed to be in remission for 6 years from liver mets.

I am still in remission, but my last echo showed an ejection fraction of 45%-50%.  So it has been steadily decreasing.

I realize that I may soon have to stop Herceptin for awhile, but I sure don't want to do that.

Anyone else experience this problem?  Is it possible to go on heart meds and get 75% of a Herceptin dose?

My onc hasn't arranged for an appointment yet, but I am holding my breath.

Denise

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  • ElaineD
    ElaineD Member Posts: 2,265
    edited August 2010

    You probably won't need meds. A break of a month or two will likley be enough for the ejaction fraction to recover. It happened to me a while back, and a short break was all that was needed.Your rate is still ok-and only just becoming borderline, so I wouldn't worry too much.

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  • Denny123
    Denny123 Member Posts: 1,886
    edited August 2010

    Thanks!  That makes me feel better.

    Always waiting for the other shoe to drop!

     Denise

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  • Sunbunny
    Sunbunny Member Posts: 38
    edited August 2010

    I had Herceptin for a year after I finished chemo but I insisted that I have it weekly instead of every three weeks.  I know it is very inconvenient to have an infusion every week but I felt it was best to 1. have a relatively same amount of Herceptin in my body at any given time and 2. it would help prevent a trend toward heart failure and the possiblity of having to stop treatment however brief. 

    I hope things improve for you asap.

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  • kimamos
    kimamos Member Posts: 5
    edited August 2010

    You stated that you had been on Herceptin for 6 years. Do you take it IV or by mouth & how often is your dose?

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  • Denny123
    Denny123 Member Posts: 1,886
    edited September 2010

    Herceptin in not oral and is by IV only.  I get it every 3 weeks, but it is possible to get 1/3 dose weekly.

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  • DianaT
    DianaT Member Posts: 532
    edited September 2010

    good to know too! I have been on herceptin for a little over two years and my ejection fraction is declining too... I have an appt in Nov with the onc, so I am sure this topic will be coming up.  I also take tykerb in addition to herceptin/avastin every three weeks.

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  • MiracleMileM
    MiracleMileM Member Posts: 103
    edited September 2010

    I worry about my ejection fraction for fear of being cut off from Herceptin but so far stable.  A lot of the supplements we all take are probably heart protective as well:  L-Carnitine, alpha lipoic acid, fish oil stuff, CQ-10.  And my doctor has also assured me that any problem with the ejection fraction would probably be resolved by a short Herceptin holiday.   

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  • Denny123
    Denny123 Member Posts: 1,886
    edited September 2010

    I will have another echo in Oct.  My onc won't let me take any supplements at all. He doesn't want to take the chance that they will negate the effects of Herceptin.

    Every time I hear that a supplement would be beneficial, he does bloodwork and tells me that I don't need it.  Oh well....

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