Herceptin Heart Attack

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  • Alicethecat
    Alicethecat Member Posts: 535
    edited November 2012

    Hi TonLee

    After reading info on this website, I was surprised the docs in the UK didn't do a baseline ECHO before I started Herceptin too! I asked a nurse but she said they didn't do it at that hospital.

    I was just coming to the end of chemo so I didn't have any fight in me to insist, unfortunately. Will have to hope that the mitral valve regurgitation doesn't get any worse. I have an ECHO every three months.

    Have you changed your mind re any heart medication?

    Best wishes

    Alice

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

    Arlene,

    It's my understanding that it's the BB's job to keep your heart rate down.  My Cardiologist said I would hate it. lol

    Alice, I'm on Lisinipril, but probably only for another couple months.  It doesn't really seem to be doing much for me...and I don't like to take medication for "nothing."  Of course it could be helping me to maintain EF, guess I'll see when I get off it.

    I wouldn't worry about not getting a baseline.  What's done is done.  Though it is very frustrating when I read stuff like this.....I'm sure it is much more frustrating to live it. 

    The good news is, if any heart issues are the result of Herceptin, there is a good chance it will reverse.

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

    Thanks Omaz.  As I researched further, I realized it is not an ACE.

    TonLee:  I know about the BBs keeping the heart rate down but I don't like it and if there is something else out there that works the same and lets your heart do its thing, then I want it.  I'm sick of going out and trying to run and only being able to go short distances, walk and then short distances again.

    I have a call into my cardiologist.

    Thanks everyone!  Arlene

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

    Arlene,

    I'm impressed you can do even that on a BB.  My uncle takes them and besides walking, he can't do much else.

    If you find something else that works tell me!!!!  lol  My cardiologist said those (Ace, BB) were my only two options.

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

    TonLee:  I've been researching the ARBs that Omaz mentioned and they should work and from what I see the SEs are very limited.  I can walk forever and ever on the BBs but I want more than that...greedy aren't I?  Are you on a BB?  Good grief I sure wish I had realized my limitations all this time were the BBs.

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

    Arlene,

    If you get teh ARBs let me know how they work for you.

    No I am not on a BB.  My cardiologist said, "Normally I'd put you on an Ace, and a BB."  lol  But since I'm an athlete he knew I'd stop taking the BB because of its affect on performance.  And since there is no evidence (study) to show that BB actually help Herceptin damage....we skipped it :)

    My cardiologist is very honest.  He believes there is a gap right now in the medical profession....a Onc Cardiologist gap if you will.  He isn't that experienced with Herceptin so consulted an Onc, who only has experience with the cancer tx se side.

    He believes, and I concur, more studies need to be done to determine if traditional heart meds actually help Herceptin damage, as opposed to say, women taking it, their hearts rebounding on their own, and attributing the increase EF to the meds.

    I know the Ace is not working for me.  I've been on it over year, and my EF has fluctuated a few points upward...but as of right now, nothing significant.

    Soooooo...I'm probably gonna stop taking it soon.  He said I can stop whenever I want.....since it doesn't seem to be helping.

    I found this great article with a chart, scroll down, it summarizes everything really well!

    http://www.aafp.org/afp/2002/0801/p445.html

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

    Hi TonLee:  I talked to the nurse at my cardios office and she's scheduling me with his PA who is a marathon runner and understands my dilemma.  I'm on 2 blood pressure medicines, one is Cozaar which is an ARB and then the Coreg which is to increase the EF and that's the one causing my problems.  I think they will get me off the Coreg since my EF is improving.

    Omaz:  How come you know so much about all of this?

    I would never have known most of this stuff without this blog!

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

    Wow TonLee:  From what your link shows, I should never have been put on a beta blocker knowing that I run and it sounds like I shouldn't be doing anything while on them....and hypoglycemia after working out.  Amazing!

    My appt is tomorrow.  We'll get this all squared away!

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

    Do doctors even pay any attention any more?  When I was seeing this doctor last week and asked about the medicine making me dizzy, he said your pulse is low which means you are fit.  Right!  My pulse is low because of the BB.  Granted he didn't put me on it but he said it was a good medicine.  Right then he should have noted the disconnect!  He knows I exercise!  Hoping the PA will know better and I'm armed with lots of questions and stats thanks to you ladies.  This blog goes beyond BC.

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

    Make sure to report back Arlene!  lol  I like to have lots of info when I go see my cardiologist as well :)

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

    Thanks for that link TonLee. My DH happened to run into my cardiologist and she asked him how I was doing. He told her i was trying to train for a mini triathlon and she asked if he was asking if I could quit the medications. Now it makes sense. I was never an athlete before, but I really want to do this. The funny thing with me is, I seem to have fine energy on the elyptical, just not the treadmill. I can do3 miles on the treadmill in half an hour. I'm sweating, but I could keep going if I wanted to. But the minute I try to go faster than 4.5 mph on the treadmill, I have to quit. I just don't get it. I'll discuss it with her when I see her in January. She told me before though that she wanted me on the medication for life whether my EFimproved or not. If my EF gets back to normal range, she is going to have a hard time convincing me to stay on the meds. Love this thread and all the great information here.

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

    I'll definitely report back TonLee.  I'm so ready to get off the BB and able to work out effectively again.

    Kay:  Similar with me.  I go out to run and can only run short distances and have to stop and walk.  I do speed work and go really fast but not far which is so frustrating.  I can do 6mph on the treadmill but even a minute at that speed is difficult. 

    I'll let everyone know what happens with me and feeling confident I'll get off the bbs.

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

    Kay,

    Yup, sounds like the BB are keeping your heart rate down, which means your muscles aren't getting the supply of oxygen rich blood they need to maintain performance.

    I'm ok on Lisinipril.  I only take 5 mg.  10 knocks me out!  lol  Really.  My Dr said I could go off anytime...but what if that little bit has kept my EF from falling more?

    The latest studies show that new problems can arise five years after tx...I extrapolate from that women who already have issues on Herceptin, *might* then also have a falling EF without meds...I dunno.  That's a little leap...but seems to make sense.

    I may just wait and see....5mg probably doesn't matter one way or another....but I KNOW after over a year it hasn't hurt.  I don't KNOW if I stop that my EF will not drop.

    Decisions.  Decisions!

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

    Arlene - I have had blood pressure troubles since I was young.  No apparent reason for it so it seems that I must have some genetic risk.  Took a few tries to get the medications right and I had to learn stuff.  I take both an ACE inhibitor and an ARB.  Both work on the same aspect of blood pressure regulation so thats why I think I have some genetic risk in the area.  The ARB really saved my butt many years ago, diovan - works really good for me.  Let us know what you find out tomorrow, good luck!

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

    Thanks Omaz.  I'll find out today but wondering if you can be on 2 ARBs.  I was on the Lisinopril and after about 10 years (my high bp is genetic too), I got this horrible cough which then turned into what I thought was the flu.  They took me off the Lisinopril and presto I was well and then put me on the Cozaar.  Then it wasn't enough so they added the Metroprol which I didn't seem to have many problems with until all the PVCs from chemo/herceptin and they upped it majorly and then the real problems came when they put me on the Coreg.  Hoping today they it all squared away and my EF isn't affected.  Problem I deal with here is that no one but my oncologist has the slightest clue about Herceptin and she doesn't want to get involved in day to day care of her patients which I get!

    BTW, there were also some inconclusive studies that ARBs can cause cancer.  Oh well!

    Have a great day everyone and I'll report back this pm.

    Arlene

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

    Afternoon:  Well, they don't put you on 2 ARBs and I can't have an ACE since I've reacted to them in the past.  When you are on a BB, they sure hesitate taking you off of it but he kept saying your EF if fine so you should be good.  He says there are BBs that don't impact the heart rate as much.  He started me on HCTZ and an extremely low dose which I'm pretty sure they are going to have to up but we shall see.  My BP goes really high if not controlled.  He said (like all the others) that the Coreg is the BEST at recovering the EF but that it is the strongest so that's why I was not functioning as well.  Now, I on a twice a day dose of it and hoping now that I'm going off of it, my EF won't drop.  Worries, worries.

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

    Good grief.  I was just researching this medication and can't take it.  I am allergic to penicillin and sulfa - don't these doctors read your charts!

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

    Arlene,

    I was hoping you'd get some definitive answers today!  DANG IT!

    My cardiologist told me not to worry about skipping the BB.  He said if my heart was going to rebound, the BB just helps it do it faster, but if it has the ability to heal itself, it will do it.

    I'm allergic to sulpha as well!  Learned that the HARD WAY after MX!  (ER visit.)

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

    Thanks TonLee.  Good to know about the BB.  Calling again in the morning! 

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

    Hi Arlene - Are you already on an ARB?  I am confused, why 2?  My impression is thatgoing off the BB won't cause you to lose function, I agree with Ton that it just might help recovery.

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

    Omaz:  Yes, I'm on Cozaar (losartan) which is an ARB and have been on that one for a few years but it wasn't controlling my bp well enough so they added metroprolol (a BB) which didn't affect my exercise regime at all but then when I had all the PVS, they really up it and then changed it to the Coreg which they tell me is VERY strong and that is what is affecting my ability to exercise.  I'm sure I confused myself on this so no wonder someone else would be confused. 

    I was thinking if they took me off the Coreg, they could add a second ARB but no way.

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

    Arlene - that makes sense.  What about clonidine?  Kindof dries my eyes but it worked when I used it.  So it sounds like the doc is ok with you going off the BB?  

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

    I'll ask about the Clonidine but it says it lowers heart rate so need to talk about that one.

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  • Alicethecat
    Alicethecat Member Posts: 535
    edited November 2012

    Hi Arlene

    Do you have a link you can share re penicillin and Herceptin?

    I'm allergic to penicillin and I'm on Herceptin. There were no side-effects for me when I had Piriton in the IV prior to Herceptin. Had very strange side-effects when the nurses tried Herceptin without Piriton - pain in arms, shoulderblade and side of heart.

    The docs prescribed Piriton before Herceptin and that stopped any side-effects.

    Best wishes

    Alice

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

    Hi Alice:

    No, not Penicillin and Herceptin but Penicillin and a blood pressure medicine.  Sorry for the confusion!

    Fortunately, other than the EF I had no SEs from Herceptin but of course had to get the BIG one...the EF.  :)

    BTW, ladies, I'm off the Beta Blocker (Coreg) and taking the HCTZ...my sister in law is an MD and she said I will be fine so give it a try.  We'll see how it goes.

    Arlene

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

    Good deal Arlene - I hope it works out!

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  • Alicethecat
    Alicethecat Member Posts: 535
    edited November 2012

    Hi Arlene

    Sorry, my mistake! I see you were talking about penicillin and sulfa. I've got Herceptin on the brain!

    It is scary re the ejection fraction...Hoping that your pills are working for you.I had a similar scary finding too - a leaky heart valve. Might have been there all the time or might have been caused by the chemo.

    Hoping for the best for us!

    Best wishes

    Alice

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  • bcbarbie10
    bcbarbie10 Member Posts: 319
    edited November 2012

    My valves were leaky, too, even with the baseline echo before chemo. But my onc says they're negligible. I did spinning classes and ran races with them not knowing. So i guess that was okay.

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  • Alicethecat
    Alicethecat Member Posts: 535
    edited November 2012

    Hello Barbie

    Thanks so much for posting! Very impressed re your spinning! Feel relieved to hear about your experiences re your leaky heart valve.

    Mine was described as minor mitral valve regurgitation so I am hoping to do as well as you - not sure I'm up for the spinning, however. Will stick to dancing!

    Best wishes and thanks

    Alice

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

    Hi everyone:  Hope you had a wonderful Thanksgiving.  My daughter and 14 month old granddaughter have been here from Cali, so I've been pretty busy.  Forgot how active little ones are.  :)  Loving it!

    The HCTZ seems to be doing the trick.  I did the 1/2 marathon on Sunday and was able to run much more and finished in 3 hours...considerably slower than pre-chemo, etc. but I'm so happy.  I was a whipped puppy at the finish because I've basically been walking with a bit of running in between because of the BBs and Sunday was the reverse.  Cardiologist wants to do Echo's every 6 months to ensure my EF doesn't drop...I'm good with that especially in light of the studies regarding Herceptin.

    Arlene

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