Herceptin Heart Attack

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  • TonLee
    TonLee Member Posts: 2,626
    edited May 2013

    Pam,

    There doesn't seem to be a link between Herceptin heart damage and family history, or even prior heart damage.  They simply don't know who will get damage and who won't.  Though the highest number I've seen is 25% will experience some ejection fraction problems....and most of those will heal and get back to normal.

    Yes, if you want a frank opinion.  Yes GET A SECOND OPINION.  I think it will give you some peace and added information.

    Would I do it again?  YES!  I'm Stage 3 with nodes, so no way I would skip it.

    Hope that helps.

    Good luck!

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  • GrandmaV
    GrandmaV Member Posts: 1,267
    edited May 2013

    Pamela, What blood pressure medicine are you on?  I had high blood pressure for years before diagnosis and was already on two of the meds. that they think may help keep you from having heart damage.   They really don't know if they help or not but my cardiologist thinks it does.  He has had a lot of of patients on herceptin and those who are on the meds do better.  I'm on metoprolol and lisinopril and my ejection fraction stayed the same (60-65)through out the year on herceptin.  Sometimes the damage doesn't show up for up to 5 years so he is going to continue to monitor me once a year for 5 years. 

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  • PamelaKay
    PamelaKay Member Posts: 107
    edited May 2013

    Thanks, TonLee, that does help.

    GrandmaV, I don't take medication. I control it with diet (no salt) and exercise.

    It's hard to know what to think about all the stories of permanent heart damage I have read from those on Herceptin.  I will definitely discuss this with my MO and possibly seek a second opinion.

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited May 2013

    MemaSue:  Looking forward to seeing/meeting you in Vegas.

    Grandma:  I was on Metoprolol before and during chemo and I had the issues from Herceptin so it didn't protect me.  But all is good now!  :)

    Welcome PamelaK:  Glad exercise and diet work for you.  They sure don't for me...I so watch what I eat and exercise (run) a lot and still have the HBP....genetics they tell me.   You've found a great group of ladies.

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited June 2013

    I had to quit Herceptin after my first two Herceptin only tx. So about 6 months worth is what I received. My EF went below 47. And since I already have a pacemaker, off of Herceptin, I came. Now almost 9 months out of Herceptin, it is back go 55%. Even with the problems, would I do it again? You bet.

    For those of you with BP issues, I did not have any issues before my bmx. Then I shot up to 225/130 in the hospital, and put on two BP meds. two months later right before my third tx, ended up in hospital due to acute renal failure (kidney failure). Was a problem of my meds, and chemo and my.tx SEs, ie, diarrhea. Threw me way out there in dangerous territory. So they had to put me on a different med for BP. Kidney came back, but real scary for a while. Don't want to scare anyone, but be aware of all your meds, and if you have the big D , be even more careful on your liquids! BTW, I didn't feel bad at all, it was a routine CMP that found a.very high BUN#. Much love.

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited July 2013

    Mema:  Sorry I missed you.  I had last minute schedule changes and my time in Vegas was a whirlwind.  Landed on a Sunday afternoon, visited with family and friends and flew out for home on Tuesday.  Whew!  Hope you are doing well!

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  • kdking
    kdking Member Posts: 73
    edited July 2013

    Hi all! Haven't been on for a while but wanted to share my good news. Next Wednesday is my last herceptin treatment! I will also reach my two year marker August 4th! I had to take nine months off because my EF dropped to 18 last summer. With the help of an amazing cardiologist at the Cleveland clinic my EF is back up to 45 and I was able to complete my herceptin. I am finally back to work and feeling great.

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  • vballmom
    vballmom Member Posts: 426
    edited July 2013

    Kerrie, that is such fabulous news!  18?  Oh my goodness!  Would you be willing to share your story?  Are you on an ACE inhibitor and beta blocker? Any supplements? Diet and exercise?  I know many would be interested.

    That's awesome that you hit your two-year mark and even better, that you are feeling well. Thanks for sharing.

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  • AJ101
    AJ101 Member Posts: 1
    edited September 2014

    Hi I had Herceptin for a year , they did an Echo after the 4 A/C then started Herceptin . although I reported extreem fatigue and heart palpitations he did not do an Echo until the year was over MY Echo came back at an EF of 29, I was put on corag 12mg BID and Lisinapril 5mg in the AM by a cardiologist. Had another Echo done and now, My EF is now 27 and I am at risk for SCD, It been about 3 months since my last infusion. My Oncologist minimized my concerns when I told him he should have done and Echo after every 3 months. I am hoping my heart  regenerates but there is no way to know if it will. I am scared and worried more about this then the BC. 

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  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited September 2014

    My EF dropped to around 29 as well. I had to stop my Herceptin treatments early (I made 8 months of the year I believe). Prior to starting Herceptin I was at 60%.  I was put on Coreg and lisinipril.  The coreg made me pass out and I asked to be taken off of that.  I was put on Metropolol instead.  I had a reaction to the lisinipril soon after  I started treatment for stage 4 breast cancer. I had been on it for over a year.  Now I am on losartin.  I am happily stable at 45-50% now.  I have been that way for over a  year.  Give it some time. Your body will hopefully bounce back. It has been through the ringer.  

    Hugs

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  • Gretta
    Gretta Member Posts: 70
    edited November 2014


    Hi Girls,

    was always fit 'til breast cancer reared it's ugly head.  Never thought I'd be one of the girls who would possibly have to come off Herceptin, so worried cos here everyone calls it the magic bullet for girls like us.  I've only had 3 treatments & my EF has gone from 64 to 48%.  Has anyone had to come off this early & done well.  Just so worried, would appreciate any input.

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  • JulieLynn
    JulieLynn Member Posts: 144
    edited November 2014


    Hi Gretta,

    I had the same issue.  I started and restarted Herceptin several times - They'd wait until my EF came back up, then restart it, and then I would have to stop again.  My onc sent me to a specialist at the University of Michigan who told me at that time that there were no real studies on not finishing it or taking longer to finish it (this was in December 2012).  He told me at that time that I could take up to two years to finish it.  So, after stopping and starting over and over again, my onc finally started having me go every other week for a single dose.  That seemed to help things - My EF did drop but not as fast and I was able to finish treatment.  I started in Dec 2011 and finished in Dec 2013.  It took about four months after treatment but my EF did return to normal.  I think I was 48% at my lowest.  I also had the AC and Taxol treatment too and so far I'm doing well.  :)

    I hope this helps!

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  • Gretta
    Gretta Member Posts: 70
    edited November 2014


    JulieLynn,

    thank you so much!!  I've been crying for the last 2 days, I know how important Herceptin is for us.  I was hoping so much that this treatment would all be finished by August next year.  Good to know that you are doing well having your doses interrupted.  If it means I'm going to be ok if they have to stop & start, that is reassuring.  My EF had dropped after the Adriamycin, so thinking this was what started it, I hadn't even had Herceptin yet.  So hoping everything will be ok.

    Once again thank you, it's good to know girls can have these hiccups & still come out on top.

     

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited February 2015

    I had a heart attack during Adriamycin/Cytoxan which I didn't know about until my EF dropped

    from 68 to 39 on the 3 month Herceptin ECHO, so Herceptin was stopped.   This was almost 3 years ago.  My Onc said

    your heart is scary bad.  I can laugh about that now.  So they sent me to a great Cardiologist who

    discovered not only the valve damage but the heart attack.  I remember the night I had symptoms,

    but thought it was all from chemo SEs.

    Anyway, 3 years later, had my followup tests today.  The meds have continued to stabilize my heart,

    I am asymptomatic, my EF remains at 39 but I feel good.  My Cardiologist said that I am doing well.

    My heart took a big hit but is finding a way to do its job well. 

    As for the Herceptin, I was only able to do the 3 months which terrified me at the time.  My Onc said, "I don't

    want you to spend one minute worrying you did not have enough Herceptin.  I believe you did."

    So, I believed him, and 3 years later, I am still doing really well.

    Don't be afraid to get on heart meds - they work and they help!

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  • NATSGSG
    NATSGSG Member Posts: 231
    edited April 2015

    These articles about cardiotoxicity relating to over medication of Herceptin can perhaps help?

    http://www.pharmac.govt.nz/pdf/231205.pdf

    http://www.cancernetwork.com/oncology-journal/her2-targeted-therapy-early-stage-breast-cancer-comprehensive-review


     

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  • zjrosenthal
    zjrosenthal Member Posts: 2,026
    edited July 2015

    I was told last week that my heart function has dropped after being on herceptin / perjeta since last November. 8t is st8ll in the normal range so I am getting my next infusion on August 3rd. They are doing an echo before each infusion going forward and will stop if the level drops below normal. Scary stuff. Love, Jean

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