Scared about having to quit Herceptin after 6 months.

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sfar
sfar Member Posts: 32
edited June 2017 in HER2+ (Positive) Breast Cancer

So, my treatments were going along as planned except for Herceptin. My LVEF went from 53 prior to any treatments to 40-45 after 6 Herceptin infusions. I even started seeing a cardiologist who put me on blood pressure meds (bp was borderline high) and we waited for a total of 12 weeks at which point my LVEF returned to 50. My oncologist won't continue Herceptin as she said it is not worth damaging my heart and not being able to get me back to at least where I started. I am 61. While I understand the thinking...I'm really sick inside and scared that I haven't had the protection I need from Herceptin. OMG...when can I stop worrying :( I try to keep busy and do what I can with my diet and exercise, sleep etc.

I'm wondering if a trip to Cleveland Clinic's cardiology/oncology department is worth investigating. Or, maybe I need a counselor who can help me quite dwelling on it. Any experience or wisdom is appreciated.

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  • Sassa
    Sassa Member Posts: 1,588
    edited May 2017

    I see no one has responded to you. There have been studies done with various lengths of time for herceptin treatment. I tried google but the only one I came up with is a recent study in the UK which is recommending shortening treatment to twelve weeks (I believe that was the time) as the effectiveness of the treatment between 12 weeks and a year was somewhat close.

    In any case, when I was doing herceptin for a year, I had two different oncologists (my oncologist here in Florida and one I saw in Maryland for herceptin infusion when visiting my daughter) tell me that most of the benefit of herceptin occurred in the first three months of herceptin.

    Add to that the very long half life of the drug in the body, and you are still continuing to obtain benefit from your last dose. Sorry, I no longer remember the half life, but I remember at the time I calculated out that it would be around four years before the last molecule of the drug disappeared from my body.

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  • tessu
    tessu Member Posts: 1,564
    edited May 2017

    What was the test used to measure your LVEF?

    If it was the nuclear medicine test (gamma scan? I don't remember -- chemobrain here), that may not be as accurate as measurement by cardiac ultrasound. I was switched from the gamma scan to ultrasound because I started having panic attacks because the nuclear med tech always had to try several times to get the iv line in. The cardiologist said she wished the oncologists would switch to always using ultrasound because it is apparently more accurate for LVEF. Ultrasound can also usually tell why your LVEF has dropped, and what part of your heart isn't working properly. So maybe yes a second opinion cardioogy consult might be helpful?

    Also: Even six months of herceptin helps!



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  • sandikr
    sandikr Member Posts: 6
    edited June 2017

    I too had to stop herceptin due to a drop in my heart function. I had 10 weeks of taxol/herceptin, quit taxol after 10 weeks due to side effects. Did finish the other 2 weekly herceptin infusions. When I started the every 3 weeks herceptin I had to wait because my ejection fraction was in the low 40's. A MUGA scan showed it recovered to 50-51 so they started again but after 3 infusions my EF was back around 40. That time the oncologist said she would stop it entirely for much the same reasons you were given. I was 69 when I started this trip, 70 now. I too was concerned about not getting enough since the oncologist stressed how important it was. For many reasons I went to a second oncologist. She agreed with my treatment plan and the stopping of herceptin. She indicated there have been studies where 3 months (12 weeks) of herceptin gives almost the same results as the year they planned. She said basically they were treating me for something I might not even have. I was Stage 1 with a very small tumor and no lymph node involvement. I also went to a couple other sites, one in the UK, where protocol is changing regarding herceptin. So I've decided to live my life and not worry about it. I hope this helps.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2017

    ECHO cardiogram is the test I had, and it is more of an ultrasound type scan. I was told that the damage to the heart from Adryamicin (Red devil) is permanent but the damage from Herceptin is temporary. After low numbers during Herceptin, I'm back where I started before breast cancer.

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