Advice needed- Herceptin and low LVEF rate?

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Milane
Milane Member Posts: 34
edited November 2014 in HER2+ (Positive) Breast Cancer
Advice needed- Herceptin and low LVEF rate?
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  • Milane
    Milane Member Posts: 34
    edited November 2014

    Hello ladies

    I need some advice or thoughts. I have completed  4 dense dose AC/Cytoxin, 12 rounds Taxol/Herceptin and achieved a PCR after Bilateral Mastectomy. My LVEF base line was 65-60% throughout this time. I had a 6 week break from Herceptin due to my Hysterectomy and Ovary removal. I continued Herceptin at a infusion rate of 30 minutes. Last week my echo showed a drop from 60% to 48% (in 3 months). My nurse told me over the phone that it went down a little. I had to ask her what exactly is a little. I was told 48%!! I replied with wow that's a lot. She went on to tell me my Oncologist says its ok to have my treatment next week. I am really thinking about cancelling my next treatment and waiting for my next echo. Actually I am debating if I should just stop 3 treatments early.

    I also have to say that I do not really trust my Oncologist very much due to lack of communication and explanation. Everything I have learned about my cancer I learned on my own.

     

    Milane

     

     


     

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  • MarshaMay
    MarshaMay Member Posts: 95
    edited November 2014

    My LVEF ( left ventricle ejection factor) was about where you area d I've been on Herceptin off and on since Oct. 2011. . Back in May it went down to 10-15. In absolute terms, not a percentage drop. Clearly I had to go off the Herceptin and Perjeta until my LVEF came back up to an acceptable range. I was actually pretty sick and with the help of my cardiologist I gradually raised my LVEF back up to 45-50. Most oncs want it at 50-55 to administer Heceptin but because I am Stage IV my onc settled for 35-40 and let me resume the life-extending chemo.

    So clearly, your heart (and mine) can heal itself. While I was so sick I had echos every three weeks. Instill have one before each infusion to be on the safe side. You might want to consult a cardiologist on your own. So just don't skip any regular echos and see if your onc will talk with a cardiologist about this. A second opinion never hurts. My cardiologist (a woman) has a special interest in the effects of chemo on women's hearts. There are chemos out there where the damage is not reversible, and chest radiation can further complicate the situation. Fortunately those are not things you need to sorry about.

    Just to let you know, I came back from a dangerously low LVEF. Of course I'm now on heart meds for the duration. Finally, if you decide to skip some infusions, I had to be off chemo for about 4 months. And scans have not shown progression during that period.

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  • Fionascottie
    Fionascottie Member Posts: 78
    edited November 2014

    I got the news 3 days ago that my oncologist is referring me to a cardiologist because my last echo showed at drop from 60% (baseline) ejection rate to 50-55%. My last chemo treatment ( which included Herceptin and Perjeta) was 9/18/14. I had a break and then surgery on October 23rd ( partial mastectomy) . My oncologist was ready to get me back on Herceptin for the remainder of a year when this echo came back with the drop. She has referred me to a cardiologist and is also giving me another 4 weeks to see improvement before resuming Herceptin. Meanwhile I am packing the wound from my surgery and waiting for healing so that radiation can start. Healing has not gone well!

    I've been very positive about everything up to now and weathered through 6 rounds of Taxotere and Carboplatin, with a clinicalStage 1a tumor.....when the pathology report came back after chemo and surgery a 2.4cm tumor had been removed....one that had not shown up on ultrasound or mammogram. So the stage changed to 2b. I'm struggling a bit now to wrap my mind around the heart question and the new facts about my tumor. Thankful for kind doctors .


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  • Milane
    Milane Member Posts: 34
    edited November 2014

    On Thursday I made an appointment to see my cardiologist. I really am glad I made that decision on my own. He basically, after having a hard time finding the right words, told me my heart was fine!! He claims the person that read or wrote the report made a mistake. OMG are you kidding me was my response! I asked him if 48% was a mistake then what was my LVEF rate? He claims he just read my echo and there was hardly any change from the previous one 60%, but he couldn't give me a final number. I cannot believe this can happen. Oh and all the while my ONC doesn't know about the mistake but was fine with giving me treatment at 48%. My trust in doctors is seriously slipping. I guess if I wouldn't have made that appointment, they would have never told me!

    My report shows (manually typed in at the top) LVEF 48% and at the bottom the measurements from the computer says EF 60%. I sure hope he is correct because I am scheduled for Herceptin on Tuesday.

     

    Milane

     

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  • SmartassSmurf
    SmartassSmurf Member Posts: 157
    edited November 2014

    Glad to hear the 48% was a mistake.

    Mine went from 67 to 52. I was referred to see a cardiologist, and they put me on Toprol to protect my heart. I have been on that for 3 months, and will have my echo and see the cardiologist again in 2 weeks.what a crazy ride this is. I am now on 3 heart meds...blood pressure, cholesterol & the new protection med.

    Good luck.

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