HERCEPTIN TREATMENTS CANCELLED FOR ME

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bethen
bethen Member Posts: 82

Had a bit of a sad day today.  I have been on Herceptin for over 2 1/2 years, with my treatments every three weeks.  Oncologist seems to be on top of everything with consistent muga scans every three months to keep on eye on my heart function.  Last week was my muga and there appeared to be a changed in it, the reading came in at only 40, so I proceeded to have an echo done and they said that it was more likely to be around 46.  So now, I have been removed from the Herceptin treatment and of all things I now have to see a cardiologist.  WOW!!!! Panic is starting to set in, I am afraid my heart will just stop.  I have been feeling alot of rapid heart beats lately, almost like the beat is out of sync, but I just put it down to anxiety attacks that I have.  Has anyone else had to stop the treatments and see a cardiologist, I sure would like to hear your story.  My oncologist said that most likely the heart function will return but wants me to see the cardiologist just in case.

Thanks

Betsy

Comments

  • Denise-G
    Denise-G Member Posts: 1,777
    edited December 2012

    I had to quit Herceptin after 3 months.  My EF went down to 39 and has remained there.  I feel good though.  Cardiologist put me on 3 meds.  Honestly, I don't even think about my heart issues.  It beats and I feel good.

    It will work out...I've had absolutely no side effects from heart meds.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2012

    I have not had any issues with echos - was able to get in my year of Herceptin, but here is a thread full of ladies that had issues:

    http://community.breastcancer.org/topic_post?forum_id=69&id=776430&page=1 

  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited December 2012

    I had to stop my Herceptin treatments early.  I have been seeing a cardiologist for over a year. They put me on a beta blocker and an ace inhibitor.  I would guess they will do the same for you.  I actually just had my first echo in over a year today and am awaiting the results.  My original EF was 60% and it went down to 40%. I am hoping it is back up again.  I feel fine. I did have to change my beta blocker once but after that I have been fine.  There is a great thread about this very thing in the Her2 forum. It is a great source for information and support.  I was very scared at first and and appreciate your feelings.  It is a lot to process all at once.  Good luck.

  • Kay_G
    Kay_G Member Posts: 3,345
    edited December 2012

    Check out the threadSpecialK posted the link to. There are several of us who have had the same issue. Mt EF went from 60 to 45. I stopped herceptin and started a beta blocker. Even though my EF remained at 45, they restarted herceptin after 6 weeks. At that point, i still had sixmonthsof herceptin to go. A blood level got a bit worse and the cardiologist added an ace inhibitor. I finished the herceptin in June. An echo right after said my EF was still at 45, but my cardiologist saw reason to think there was some improvement. I am not getting another echo until next June though, so won't know until then.

  • Amy2522
    Amy2522 Member Posts: 3
    edited January 2013

    I also had to stop heceptin because of low heart function.  I had a normal EF before treatment...now my EF is in the low 30s.  It has been in the low 30s for 7 1/2 months.  Has anyone had this side effect?  How long will it take for my EF to recover?  Is there any hope?

  • Kay_G
    Kay_G Member Posts: 3,345
    edited January 2013

    Amy, you are seeing a cardiologist, aren't you? There is hope that it will come up, but I think you should be on some meds which will help it recover to give yourself the best chance of complete recovery.

  • Amy2522
    Amy2522 Member Posts: 3
    edited January 2013

    Kay, thank you for responding  Yes, I am seeing a cardioligist.  I am on two drugs...carvedilol and pravachol.  (A beta blocker and water pill.) But it seems like I should be seeing some improvement by now...7 1/2 months is a long time.  Is this common?

  • bethen
    bethen Member Posts: 82
    edited January 2013

    Finally got an appointment with the cardiologist, but not until Jan 28.  Will see what he says then.

  • Kay_G
    Kay_G Member Posts: 3,345
    edited January 2013

    Amy and bethen, read the thread titled Herceptin Heart Attack.  There are several others who have had similar situations on that thread.  I am one of them.  My EF started at 65, went down to 45.  I still had six months of Herceptin to complete.  I did complete the Herceptin this past June.  My last echo was right after that.` Ejection fraction was still at 45, but my cardiologist saw reason to hope for improvement.  She has me on Carvedilol (same as you) and Enalapril (an ace inhibitor).  As I said it has been six months since I finished herceptin and six months since my last echo.  My cardiologist said we'd wait 12 months to do another echo.  Since I'm finished with herceptin, it will only give me information, nothing will change no matter what the echo says.  The cardiologist wants me on the drugs for life whether my EF comes up or not.  I am not sure I am going to stick with that if my ejection fraction does get back to normal.  Where are you from?  I am in Philadelphia.  If I can answer anything, let me know or PM me, but do check out the Herceptin Heart Attack thread, you will get lots of information there and see that you are far from the only ones in this situation.  

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