Herceptin Heart Attack

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  • TonLee
    TonLee Member Posts: 2,626
    edited October 2012

    Jitters,

    THANK YOU for posting that.  So often I hear women say, "I don't have a history of heart problems." 

    Well I didn't either.  Right now there is just now way to determine who might have problems with Herceptin, which is why it is essential to be followed.

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited November 2012

    Hi ladies:  So I had my MUGA a month or so ago which showed EF of 65 and then 2 weeks ago, I had an ECHO which shows 60.  Go figure and the cardio had no explanation for it and didn't seem concerned at all with Herceptin which he knows nothing about!  I'll chat with my onco on my next appt in 3 months.    I know everyone thinks 60 or 65 is great but I started at 73.6 and was down to 50 so if the MUGA done 6 weeks or so ago showed 65 and now the Echo shows 60, does that mean I'm dropping?  Maybe I need to see the onco again sooner!  This is such crazy stuff.

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  • TonLee
    TonLee Member Posts: 2,626
    edited November 2012

    Arlene,

    It is my understand the MUGA can have a +/- 5 point fluctuation between one MUGA and the next MUGA...because of the way they're read, and WHO does the "reading."

    I was also told by my Cardiologist that +/- 5 difference between ECHO and MUGA is usually considered ok.

    It is certainly something to discuss with your Onc, but I don't think you'll have any luck getting them to test you every 6 weeks since you fall in the "normal" range.

    Please keep us updated. :)

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  • JulieLynn
    JulieLynn Member Posts: 144
    edited November 2012

    I haven't posted in a while but I keep following this thread.  I was told by the radiologist and the cardiologist that the MUGA is usually exact because the computer does the reading and the echo can be user dependent.  I have the same person do my echo each time so it's more consistent.  The last echo was 45-50% and the MUGA showed 47% so it was right on.  I go for another echo tomorrow.  I'm 43 and my herceptin is on hold again...this time indefinitely...because of the drop in EF and I now have "diffuse hypokinesia" (slow movement of the entire heart).  So far I have completed 28 of 52 and really hope to finish.  Makes me nervous not to.  :/  Wishing everyone a healthy heart!

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  • TonLee
    TonLee Member Posts: 2,626
    edited November 2012

    Julie,

    My facility has a software package that reads the results as well.  Even with that though, they told me +/- 5.... hmmmm.

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited November 2012

    Morning:

    TonLee-Agree about the every 6 weeks testing and I wouldn't want that anyhow.  I tend to agree more with the MUGA because I think the computer reading is more accurate but since I don't want any further radiation to my system, I'll go with the ECHO's for future testing.  My doc did say with the ECHO's it is pretty important to have the same person do the test each time which isn't always possible. 

    Hope everyone is doing well!

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  • TonLee
    TonLee Member Posts: 2,626
    edited November 2012

    Good info Arlene!

    Please keep me posted on your heart.  I'm always interested!!

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  • bcbarbie10
    bcbarbie10 Member Posts: 319
    edited November 2012

    Okay, i got a mini scare again today when i went back for the first of my twelve hi dose herceptin alone every three weeks. I met with my onc before the infusion and turned out he wasnt comfortable giving me the triple dose with my last echo from september which was 58. He ordered a stat echo and the tech got a reading of 54! I really had to fight hard to keep the waterworks in in front of all those patients and my daughter who went with me. Brought out my arsenal of novenas while waiting for the cardiologist. God is good. The cardio gave a reading if 62! Not as much as i prayed for, i was hoping for 65+, but good enough! So i got my infusion and onc said im good till early next year. Yay!!!



    Just wanted to share. Like AleneA, hope everyone's doing well.

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  • TonLee
    TonLee Member Posts: 2,626
    edited November 2012

    BCBarbie,

    Echos can have a +/- 5 margin of error.  But even with that, you're still golden!  Congrats!  Glad it worked out for you.

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  • JRyan
    JRyan Member Posts: 178
    edited November 2012

    I go for my 3rd echo next week. My first one was great (72); second was fine (64). I'm nervous that this one will be down too.

    Does anyone know, if you are on herceptin and your rate drops to, say, 50, and the dr takes you off the herceptin, will your heart start healing and the EF start going back up?  It doesn't stay that low after the herceptin is stopped, does it?

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited November 2012

    Hi JRyan:  I'm sure TonLee will chide in here but everyone is so different and everyone reacts differently.  My EF started at 73.6 and went all the way down to 50 at which point they stopped my Herceptin (after #10) but mine is climbing back up and now between 60-65.  Others here aren't climbing back as fast.  Hoping yours comes back up too!

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  • bcbarbie10
    bcbarbie10 Member Posts: 319
    edited November 2012

    Yes, TonLee, we're improving, and we will get better 🙏👊

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  • TonLee
    TonLee Member Posts: 2,626
    edited November 2012

    JRyan,

    A small percentage of women get heart damage from Herceptin. 

    There isn't a lot of data out there on these women.

    Herceptin is still fairly "new" in the world of drugs and chemotherapy as far as research goes.

    Most of the things I've found say a compromised Ejection Fraction (EF) will come back in "most" women.  And for most of those women they see significant improvement the first 12 months after stopping Herceptin.

    There is a new study out though, that shows women are still having cardiac events 5+ years out from Herceptin.  And some of those women didn't have ANY issues while on the actual drug. 

    The most troubling aspect of this study is there doesn't seem to be a plateau.  For instance, we can't get to 5 years and think, WHEW!  Good.  In this study, heart complications continued to RISE at 5+ years out.  But again, if I remember correctly at 5 years out it wasn't a large percentage...less than 25% for sure  (Other than this though, there really isn't a lot of LONG term data.)

    So, all that to say, based on the literature (so far) it is very likely your EF will rebound. 

    From my experience, reading, and multiple Onc/cardiologist visits, the most significant rebound happens the first 12 months.  My cardiologist told me last visit, "Don't plan on your heart getting much better.  It really hasn't moved the last 15 months."

    In a few women, there appears to be damage on the cellular level of the muscle, and that can't be reversed.  I guess I fall into that category.  Though I still hold out hope that my heart will rebound.

    Hope that helps answer your questions.

    My advice (and I'm no DR!)...if you have ANY issues with the heart while on Herceptin...make sure you get an ECHO or MUGA once a year for at least 5 years after you stop taking it.  The first 2 years after, these tests are recommended by the makers of Herceptin.  (With the new study showing the 5 year cardiac events though, I am looking for this to change from 2 years to 5 at the very least for women who had problems while on it.)

    Since often times compromised EF is asymptomatic, if you wait for "symptoms" it may be too late. 

    Since we are kind of in a donut hole for research at the moment, you will likely have to fight to get these tests.

    I'm shocked at the complete disregard of so many Oncs concerning the heart issue.  The "if you haven't had any problems yet, you won't" argument just isn't supported any longer by the research.

    But alas, they are slow to incorporate the new information.

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited November 2012

    Couldn't agree with you more TonLee.  The reason I think docs have their heads in the sand on this one is b/c Herceptin is such a wonder drug and has saved so many lives.  They don't want to scare patients away with the heart risk issues.  Can't say I blame them, but at the same time, I always feel patients have the right to make an informed decision. 

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  • TonLee
    TonLee Member Posts: 2,626
    edited November 2012

    Dance,

    My cousin, who actually had enough of a cardiac issue she had to STOP Herceptin, was told by her Onc...."Oh don't worry about it.  You don't need any more heart tests."

    WHAT?!?

    Even my own Onc is reticent to prescribe them.

    So I've determined, since the cardiac problem is in my records, to just go see my general practitioner every year to get the script.  The GP doesn't deal with cancer on a daily basis so still has the "better to err on the side of caution" attitude.

    But it annoys me that I have to maneuver for care.

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited November 2012

    That really is ridiculous TonLee! 

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

    Just checking back in after a long absence.  Sounds like in general everyone is doing well.  TonLee, I thought your last echo showed a small improvement?  My last one was in June, after just finishing my year of herceptin.  My EF was still at 47 (before herceptin, it was 65), but cardiologist said even though the number was the same she saw small signs of improvement, so was hopeful it would get better.  Regardless, though, she wants to keep me on the beta blocker and ace inhibitor.  I don't.  I go for another test in January which will be six months since finishing herceptin.  I will let you all know what happens with that.  My EF went down after six months of herceptin, and I was able to finish the tx.  I think being stage 3, they really wanted me to get the herceptin even with the heart issues.  I never really noticed any symptoms, but now that I am trying to exercise and train for a mini triathalon, I am.  I think the meds are making it difficult.  I can't seem to get any kind of improvement.  I get out of breath so quickly.

    Take care everyone.  I am still hopeful for you TonLee.  But my cardiologist told me, even if my EF does not improve any, I can walk around without noticing it, but if the cancer comes back, I won't be.  That's why they tried so hard with me to get the herceptin in.  It's scarey to think about what happens 10 or 20 years down the line, but then again to be cancer free 10 or 20 years from now would be win win situation no matter what.

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  • TonLee
    TonLee Member Posts: 2,626
    edited November 2012

    Kay,

    My last MUGA showed a 5 point difference, but the cardiologist said he didn't consider that enough to really label it "improvement."  +/- 5 pts for error.

    I am on an Ace Inhibitor, but refused the Beta Blocker for exactly the reason you specificed.  A BB's job is to keep your heart rate down.  It kills any athletic performance.

    Could you stop the BB and take the Ace Inhibitor?

    Just a thought.

    Thanks for the update!  Please keep'em comin!  We may be the minority in SE with Herceptin....so we gotta stick together...lol.

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  • Alicethecat
    Alicethecat Member Posts: 535
    edited November 2012

    Hello TonLee and ladies

    May I join your group? I've been reading all your posts with interest, particularly those of TonLee...

    Before starting Herceptin, my ejection fraction was measured as between 60-65. After a few rounds of Herceptin, it had gone up to 72. Could the warfarin I'm taking increased the blood flow? I am not complaining!

    However, the echo scan did note 'mild mitral valve regurgitation' (heart valve does not close properly). http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001228/

    Apparently, some people can be born with this defect or develop it and not realise. If it it mild, it is not treated.

    I don't know whether I was born with it or developed it after chemo or antibody therapy (Herceptin).

    It's a bit scary but it could be something I've been living with all along and never realised!

    Best wishes

    Alice

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  • TonLee
    TonLee Member Posts: 2,626
    edited November 2012

    Alice,

    Welcome!  Of course you may join us!  

    Did you have a baseline echo?  I'm a little confused.  I assume you didn't have a base line ECHO or you would know if your heart started chemo with the valve issue.  So did you get the #'s from a MUGA?


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  • ArleneA
    ArleneA Member Posts: 1,309
    edited November 2012

    I tell you all, the BB's are horrible for athletic performance but I'm trying so hard to get beyond it.  I'm part of a running camp where we all work together with organized runs to prepare us for an upcoming half marathon.  I used to run those with no problems and now with the BB's, I am having a really tough time.  I'm not giving up.  I tried to get the cardio to switch my medications but he wouldn't.    BOOOO!

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  • Alicethecat
    Alicethecat Member Posts: 535
    edited November 2012

    Hi TonLee

    Thank you!

    All I got before starting Herceptin was an electrocardiagram that measured heartbeat - mine was a perfect 72 beats a minute.

    It was only three months after starting Herceptin that I got the echocardiagram and read the letter from the Cardiology Dept to my oncologist re the heart valve.

    Incidentally, my heart beat per minute ranged from 85 to 100 at the echo...

    Best wishes

    Alice

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  • Omaz
    Omaz Member Posts: 5,497
    edited November 2012

    ArleneA - Why are you on a BB?

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited November 2012

    Hi Omaz:  During my first chemo, I ended up in the ER due to MAJOR PVCs which they said were either from the chemo or the Herceptin.  They have them under control and I do notice when it is time to take the pill, my heart starts to palp plus the COREQ is to increase the EF.  I do have high BP too.

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  • TonLee
    TonLee Member Posts: 2,626
    edited November 2012

    Alice,

    Heart beat doesn't really give a lot of information.  I'm surprised you didn't have an ECHO or MUGA to get a baseline like the Herceptin manufacturer recommends.

    Generally speaking, the lower the heart rate, the more fit the heart.  For instance, most athletes have a heart rate of 49+ bpm.  Some are even lower. 

    They'll likely just use your first ECHO as your baseline.  If I read your stats right you started Herceptin in July??  So plenty of time to get more tests!  lol

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited November 2012

    Hey TonLee:  I'm heading to the cardiologist this week to insist they change my medications.  I kept wondering with all the walk/jogging I'm doing that I'm not getting any better.  After reading some of your posts, I began doing research on the medications and realized they are keeping my heartbeat really low thus not allowing blood and oxygen to pump properly and that is why I can't run distances.  I can only go 1/2 mile or so at a time because I'm winded.  I can walk forever and forever though.  I find there are other medications out there that will work for me and not have the same SEs.  I'm on a mission now especially with a half marathon coming up in 2 weeks.  Good ole chemo, the gift that keeps giving!  :)

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  • Omaz
    Omaz Member Posts: 5,497
    edited November 2012

    Arlene - angiotensin receptor blocker might be a possiblity if you need a bp med.

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited November 2012

    Thanks Omaz.  I guess I need to know if my PVCs have stopped because that is part of the reason they put me on the BBs.  SOOO appreciate the information.

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited November 2012

    Darn, I just read about it and it is an ACE which they had to take me off of because it made me sick and many studies show it can contribute to BC.  I'll definitely ask though because it may work differently than the Lisinopril (ACE) I was on.

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  • Omaz
    Omaz Member Posts: 5,497
    edited November 2012

    Arlene - It's actually an ARB - the ACEi is the angiotensin converting enzyme inhibitor (can't say that with your mouth full!) so it works on the enzyme to inhibit production of angiotensin. The ARB (like diovan) is an angiotensin receptor blocker so it works to block the receptor from ever getting the angiotensin.  I take both actually because that seems to be the type of bp that I have.  I have only seen the one study showing some elevated recurrence risk for bc with the ACEi compared to the BB and I talked with my onc about it and she said it was too a small study to draw any conclusions.  I hope your PVCs are gone now.  There are also calcium channel blockers and old-fashioned clonidine type meds as well.

    This is the study that I know about:

    http://www.ncbi.nlm.nih.gov/pubmed/21479924

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