Ejection Fraction

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kathleen1966
kathleen1966 Member Posts: 793
edited June 2014 in HER2+ (Positive) Breast Cancer

Just wondering if anyone has had a lower ejection fraction while on Herceptin.  I had one echo at the beginning of my treatment and had a 55 ejection fraction.  Just had another one (seven months between) and my heart ejection fraction is 45.  This did not cancel my herceptin.  I am still able to exercise (though unable to lose even one pound) but I have noticed I am a little out of breath and tired at times.  Such as after I walk up the 40 steps it takes to get to my house.  Though I haven't spoken to my oncologist, the nurse told me this is different for everyone and there is no base for being too low.  Just curious if anyone has had this.  I did find a thread but thought it better to start a more current thread.  I will call the oncologist eventually but I don't want to stop herceptin.  Just got a treatment today. 

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  • blondie45
    blondie45 Member Posts: 580
    edited April 2011

    The oncologist should be monitoring this with you. I had to have an echo every 3 months. Mine went from being okay in the 50s down to between 25 to 30 in 3 months. It can happen fast and if you get that low you do want the herceptin stopped at least temporarily. Please talk to your oncologist about it when you see him next. In my understanding, if your ejection fraction goes too low you can be in congestive heart failure. I had to (and still have to) take heart meds and slowly build up my walking on my treadmill to 30 to 45 minutes 4 to 5 times a week to get mine back up to 45 now.

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  • kathleen1966
    kathleen1966 Member Posts: 793
    edited April 2011

    Yes, again, not sure if I like my oncologist.  I never even got a call.  I read it in the chart today while getting my herceptin. I should be getting these every three months. Thanks! 

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  • redninrah
    redninrah Member Posts: 773
    edited April 2011

    Mine was 70 and then 3 months later was 60. But she asked if it was done at two seperate places, and I said yes it was done at 2 different hospitals. She said that can affect the results. My next echo is friday so its at the same place as the 60. One thing i note, is i feel as if my heart is racing faster at times........ I didnt mention this to the onc, as i just thought maybe im more anxious. Anyways, if the heart racing faster is a problem, im sure they will pick it up on my echo on Friday, right?

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  • elmcity69
    elmcity69 Member Posts: 998
    edited April 2011

    Hi Kathleen,

    I finished my year of H in February. I had MUGA scans every three months, like clockwork. My ejection fraction went from 75 to 58 at its lowest, but that was after dose dense Adriamycin/Cytoxan and the H. It rebounded nicely in the end - I think it wound up at 69 - but I definitely had periods of palpitations and "winded" feeling during exercise.

    I'm more worried over the impression that you don't feel good about your onc. Maybe a second consult? You are worth it!!

     Janyce

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  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited April 2011

    Hi Kathleen,

    l agree with Janyce -- a consult with another onc might be a good idea.  You're right, you're supposed to have your ejection fraction checked every 3 months.  And for the nurse to say "there's no base for being too low" is a little weird -- maybe she meant there's no absolute number, and she's right about that, "too low" is calculated for each individual based on change from your beginning ejection fraction -- maybe she just expressed herself poorly, but it does give the impression that the office is not very "on top of" this issue. 

    Good luck!

    Ann

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  • snowyday
    snowyday Member Posts: 1,478
    edited April 2011

    Below 50 they must stop the herceptin, I am stunned that they are treating you this way.  Heart problbems are one of the worst side effects of Herceptin.  Please get a second opinion.  And Good Luck..Snowy

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  • elmcity69
    elmcity69 Member Posts: 998
    edited April 2011

    hey Kathleen, just checking in - how are things going?

    janyce

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  • kathleen1966
    kathleen1966 Member Posts: 793
    edited April 2011

    I am doing well, thanks soo much for checking in.  I called the oncologist's office and talked to her nurse, who told me that going from 55 (which I guess is low normal to begin with) to 45 was not a big enough dip to be of concern. I also talked to two doctor friends who agreed that 45 wasn't of much concern if I started out at 55. I was afraid for about three days to exercise but now I am doing it again. 

    I think you communicated what the nurse was saying blondie45 better than the nurse was able to. Clearly, no-one is concerned about my ejection fraction.  And the oncologist nurse said it would go back up when treatment was over and that I would likely not get another echo-cardiogram until the end of my herceptin treatment (September). Yes, I will ask for another echo next time I go to the Oncologist and get my next Herceptin treatment (April 22nd), and will ask more questions.  

    I am feeling anxious about shopping for a new oncologist.  Earlier, though everyone loves this woman, I had just not felt comfortable with her.  She is very pleasant, nice, but doesn't seem to keep me informed in the way that I would like to be. And I am uncomfortable asking her to keep me more informed.  I have no idea what I'm looking for in an oncologist. She is the oncologist that my surgeon (whom I like very much) prefers to work with and is very well liked by the radiology oncologist I saw and liked. And I need to speak up, I know. 

    There is another, very well rated breast cancer expert oncologist at the hospital I go to, that I will make an appointment to see. I am a bit limited as to who I can go see due to my insurance not being accepted at various major cancer center's here in Pittsburgh. But women I know, who are stage IV breast cancer survivors, like this man very much.

    I will also ask how low they would allow my ejection fraction to get before Herceptin would be stopped.  Anything below 35 is heart failure, I know this. I will also ask for more echo's to monitor the heart.

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  • ikacz
    ikacz Member Posts: 1
    edited April 2011

    Hi Kathleen,

    I started off as well with a low ejection fraction of 53%. I've had a combination of Muga's and echo's done. I had to skip a cycle of herceptin in February because my EF went to 49%(echo). A muga scan was done again and the EF was 50% so I was able to continue until this week when I found out that my most recent Muga is 48%. Another delay is going to happen. I personally don't think that any of these results are significantly different but my onc is being very cautious. All I know is that it's really hard going through these delays not knowing if these breaks in treatment will affect my outcome.  

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  • karenmarie1
    karenmarie1 Member Posts: 87
    edited April 2011

    My advice is to ask your oncolgist to please stay on top of the heart issues. The nurse is misinformed or did not express herself well as AnnMYC said. 35% Ejection Fraction and below is heart failure. I am pleased to hear that some of the other women had their EF go up after treatments. I have Cardiomyopathy/Heart Failure from my initial 6 rounds of A/C. (had NO MUGA or follow-up. Problems did not show up until 2005, three years after treatment.)

     My EJ went as low as 15% and has settled in at 34%. I have a pacemaker/defib implanted about my right breast and will be taking heart meds for life. There is a difference in having heart failure and being IN heart failure. In other words, your pumper could be compromised and not working well causing cardiomyopathy, but you are not IN heart failure unless you start having sypmtoms such as edema, shortness of breath, arrythmia (sp). Please let me know if you have any questions. Sometime you have to be your own advocate.

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  • whatamess
    whatamess Member Posts: 4
    edited May 2011
     After I had Adriamycin and Cytoxan my ejection fraction was 65. I had Herceptin for 15 weeks and my ejection fraction went down to 35 they stopped Herceptin right then and sent me to the cardiologist. I never got to take Herceptin again. I was devistated all I could wish for is that 15 doses would be enough. My ejection fraction went back up to 65 in 3 weeks after I stopped the Herceptin. I was on heart meds for a small amount of time but was never able to have any more Herceptin. I am 6 years and 4 months out and I am doing fine.
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  • lago
    lago Member Posts: 17,186
    edited May 2011

    "I am a little out of breath and tired at times. Such as after I walk up the 40 steps it takes to get to my house"

    Hmmm I think I would be out of breath too even before all this treatment climbing all those stairs. Tongue out

    I had a MUGA before treatment but was never tested again. My last Herceptin will be the end of September. I guess I'm OK. They do ask me if I'm out of breath, and I don't seem to be. I mean I did walk home from PT  yesterday (2.6 miles) in 80F weather without a problem. Not that I was walking fast.

    Here are some links to check out regarding how often you should be getting heart scans

    I notice the drug site says weekly then every 6 months for 2 years following completion of Herceptin. I wonder if they are just covering their ass. Seems excessive. Look for the "♥" explanation in the chart.

    http://www.herceptin.com/hcp/adjuvant-treatment/dosing-administration.jsp  

    http://www.breastcancer.org/treatment/targeted_therapies/herceptin/side_effects.jsp  

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  • kathleen1966
    kathleen1966 Member Posts: 793
    edited May 2011

    I have another herceptin this  Friday and will get another echo on this day as well.  I am soo glad you are doing so well Whatamess (sometimes I feel funny saying our names on here).  I would also not be happy if I had to stop. It is a bit of a security blanket for me at the moment. What will I do in September when I will be done!  LIVE!!!! that's what!  I will look at the links Lago.  I always love what you have to say! 

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  • Emme
    Emme Member Posts: 205
    edited July 2011

    I was just searching this site...I have cardiomyopathy now. My original muga was 68%, six months later after 4 DD Adriamycin and cytoxin and 6 herceptin txs, it was down to 48%.  My ONC didn't seem to concerned..he just stopped the herceptin temporarily....Until I went into have a hysterectomy.  My GYN wouldn't do the surgery until I saw a cardiologist and was cleared.  The cardiologist  put me on a beta blocker..bystolic 10 mg daily.  She explained that an 48% EF was the high side of low and many people function their whole lives with those numbers but I was having an difficulting breathing and chest pressure when climbing stairs...and My ekg wasn't good...I did pass the stress test but she said no way was she taking me off of the bystolic...

    I was also under the impression that the heart would repair itself after being taken off the herceptin.  Again the cardiologist said perhaps but not likely because I also was administered Adryimycin as part of my chemotherapy...

    My point is if you feel out of breath...pressure in the chest, or have a low EF...seek a cardiologist...and don't just rely on your ONC...cancer is their specailty...see the heart specialist...

    Emily

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