Herceptin Heart Attack

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  • serenitywisdom
    serenitywisdom Member Posts: 191
    edited August 2012

    Hi everyone,

    Well it has been awhile since I posted but now I have good news.  Had another MUGA last week and EF going back up, now at 67.  Originally it was 73 before I started Herceptin then went down to 50's  My last herceptin was  in April so it is taking awhile but at least things are improving.  My cardiologist took me off one of my meds and said he will check in with me in another month and then maybe I can get off the other one.  I was on a beta blocker and ace inhibitor all due to probable herceptin issues.  I am still fatigued but cardiologist says taking me off one of the cardiac drugs may make the difference.  But who knows, fatigue could also be related to arrimidex, and the fact I am moving out of my house of 18 years and getting a divorce after 38 years of marriage.  A lot going on.  Oh well, live and let live.  I am going to the beach now with my dog and son.  One day at a time.  Have a great weekend everyone.  Keeping positive has helped me and avoiding the what if  type of thinking.    

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  • MemaSue56
    MemaSue56 Member Posts: 2,129
    edited August 2012

    Serenity - ((((BIG HUGZ))))  That is ALOT to be going thru especially with the RB...am glad you still keeping a positive attitude.  I have been on herceptin for 15 months.  MUGA scans every 3 mos.  Last one was in low 50's, still taking tx.  Get next scan on 21st so we'll see.  Fatigue big for me too...I'm resigned to thinking it will always b this way so I jes keep keeping on.  Hope the change in meds help and I will keep praying that the other chit goin on passes soon!

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

    Serenity.  That is so awesome.  There is hope for us.    Ditto on the 'tireds'.  I think mine is the bp/heart meds too.  I sure hope it isn't the Arimidex and 4 years left to deal with it. 

    You certainly have a lot on your plate right now but it will pass.  Glad you are keeping busy.

    So happy for you! 

    Hi Mema!

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

    Yeah Serenity!!  Sorry about all the other stuff too!  That makes me TIRED just reading about it.  Hang in there sister.  You are strong, and your heart is recovered!! WOO HOO!!

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  • MemaSue56
    MemaSue56 Member Posts: 2,129
    edited August 2012

    Hi Arlene!!  Is Arimidex like Aromisin?  Are you still on herceptin too?

    Hi TonLee - how have you been?  You tend not to say much about yourself but sooo inspiring to others, so thot I'd ask about YOU.

    Positive healing energy, love and prayers always!

    Sue

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

    Hi Sue.  Thank you for thinking of me, that is so sweet.  I will be a year out in Sept, (last Herceptin) and my last MUGA showed no improvement.  BOO!!!

    I haven't lost hope though. :)

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  • MemaSue56
    MemaSue56 Member Posts: 2,129
    edited August 2012

    Boo is right.  Good that you haven't given up hope....gotta be something out there to help repair the heart.  How are your scans otherwise?  I didn't do the surgery, nor rads, but did do tch and still on herceptin...guess I wanna kno if you are still showing NED w/out the al's?

    HugZ,

    Sue

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

    Sue,

    I haven't had any scans so I can't really say I'm NED....my Onc refuses to give them to me.  Long story.

    I'm back on Tamoxifen.  AIs were HORRIBLE.  Every time I injured myself it would never heal.....

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  • MemaSue56
    MemaSue56 Member Posts: 2,129
    edited August 2012

    Ohh...sorry to hear that and I don't understand why your onc won't give you a scan...but I'm not a doctor either.  Anyway, anytime you wanna share the 'long story' you're welcome to pm me.  I find my little scrapes n chit don't heal like they used to either.  I'm jes concerned about the length of time I have been on herceptin.  My onco says minimum 3 years.  I remember reading your earlier posts about 'nothing proven' that long term makes a diff.  Guess I shud jes b happy I'm still kicking...and I am really a pretty positive person.  Will see after my MUGA next week if I reconsider.

    Thanks for your input Ton!!!

    HUGZ!

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  • serenitywisdom
    serenitywisdom Member Posts: 191
    edited August 2012

    Hi  and hugs to all of you wonderful women,

    Thank you for your kind words.  TonLe-sad that heart has not returned to normal but I do believe there is still hope.   We are all different and recovery can take a long time.  I went to a cardiologist, Dr. Witteles,  who knew a lot about herceptin (has done research papers on it)  If you want to PM me I could give you his name.  He is at Stanford Medical Center. 

    Everyone is different the way they experience side effects.  Beside the fatigue, after TCH I got neuropathy on the bottoms of feet which impacts my balance a little and feels very wierd and not in a good way  sometimes.  My onc said feeling might come back but it has been a year since I ended he T&C part of the chemo.  I am still hopeful though.  It took my tooth and gums about 2 years after getting wisdom teeth out before they felt somewht normal.   

    What ioes  NED mean- maybe chemo brain has gotten me again but I forgot.

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

    Serenity, NED = No evidence of Disease.....I'm actually ok with my heart doc ... thanks.  It will get better or it won't.  Not a lot more to do at this point.  I'm still hopeful tho.

    Sue, it's not a super long story.  Diagnosed in 2010 when ripping out the axilla was "standard" care.  I did some research and declined axilla dissection.  Mostly because if they found even a single positive lymph they recommended rads to the axilla anyway and because the newest research out was showing rads is better than axilla dissection when it comes to chances of LE and the absence of gross disease.

    My surgeon didn't agree.  We had many heated discussions about it.  Finally I signed a waiver and had a MX with SNB ONLY.  All 4 were positive.

    Despite the positive nodes, and the fact my tumor had already "set up its own blood supply" my Onc refused to do a PET scan citing hospital (military) policy.  Which is essentially this....if you don't do what you're told and follow protocol, you get nothing extra.  Scans are extra.  To validate this punishment in a clinical manner, they used terms like macro and microinvasion.  So in one of the nodes there was "just a little bit of cancer."  REALLY? 

    Before my RO moved over this summer, I went to see him one last time.  He told me...I should have had a baseline PET because they knew for certain the cancer traveled out of the tumor area...that it is unconscionable that I didn't.  That my "instincts" were dead on (about being punished).  He was sorry (he was new and didn't want to rock the boat at time of my dx).  And a scan now wouldn't really be beneficial due to the amount of radiation I received.

    That's it.

    So am I NED? I dunno.

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  • Omaz
    Omaz Member Posts: 5,497
    edited August 2012
    Did you all see this recent article on herceptin and long term heart problems?  LINK
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  • TonLee
    TonLee Member Posts: 2,626
    edited August 2012

    Thanks Omaz.  I'm passing this along to my cousin...she had a lower EF that came back up...but her doc doesn't think she needs to have any more heart tests! 

    This shows that women are getting heart issues FIVE YEARS OUT!

    Those of caught during tx are more fortunate because we know about it.  Five years out though...those women have no idea why they are tired, retaining fluid, etc.  Wow.

    IMO, Any Onc who has given Herceptin and doesn't monitor the heart is at best gambling with a woman's life, at worst, is a total quack.  There is just too much evidence out there to support monitoring the heart even AFTER  Herceptin.

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

    TonLee:  My onc tests for at least 2 years after Herceptin. 

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

    Good to read Arlene. :)

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

    Thanks kayb - but I have that one - was looking for the one Nance mentioned that shows more incidence of heart damage not being reversible. 

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  • bcbarbie10
    bcbarbie10 Member Posts: 319
    edited September 2012

    Thanks, Tonlee, for this thread.

    I so need it right now.

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  • bcbarbie10
    bcbarbie10 Member Posts: 319
    edited September 2012

    Hello, fellow ladies on herceptin! I have been reading the thread since this morning when i got my echo. I have seen most of you had at least 10 herceptin infusions when your EF's dropped enough to stop either permanently or otherwise. My baseline was 73, this morning it's just at 54. And so far i just had 5 freaking low-dose weekly infusions! Im due for taxotere/herceptin combo this wednesday but will talk with my onc tomorrow. Im so disappointed to say the least. Birthday's tomorrow, too.

    Praying God is yet to give me the best birthday gift ever.🙏

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

    BcBaribie:  Talk to them about slowing the infusion time way down.  Many find that the 1/2 hour (most of us were doing every 3 weeks) infusions caused problems but when they infused over a longer period of time (an hour), the impact was less.

    Sure worth asking!

    Everyone, please check out this study (I just signed up):

    http://www.armyofwomen.org/HOW2

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

    BCBarbie,

    My Onc stops Herceptin if EF drops below 50% OR it drops 20 points from where it started.  Since you read the thread you know they caught mine a little late and I dropped more than that.

    Try not to freak out....see what your Onc says.  Ask for a referral to a cardiologist THAT IS FAMILIAR WITH HERCEPTIN!  If they're not, they are fairly useless.

    There are some meds they can give you to try and help repair the heart...since you are still early in tx, perhaps if you start taking them now, you'll rebound.  I believe the longer we are exposed to the toxicity without meds to help, the more damage it does.

    That was the case for me.  Maybe not for everyone.

    Good luck!

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  • bcbarbie10
    bcbarbie10 Member Posts: 319
    edited September 2012

    Tonlee, you're right. I shouldnt freak out. Trying my best not to since my daughters are coming home from the university to be with me today. Xanax will help me keep it together, just for today i will take it round the clock. I have texted my onc still awaiting his reply. But started my dex premeds nonetheless. Hope springs eternal.

    Im sure there are ways around this.

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  • bcbarbie10
    bcbarbie10 Member Posts: 319
    edited September 2012

    Just an update! Yesterday's reading of the echo by the tech was 54. Usually, when the cardio reviews the disc, results were always the same. But this morning, checked the official result by the cardio, and it's 58! Onc says this is still all good! Yay!!! God is good. Just waiting now for the blood chemistry and cbc, then i will get ready for tomorrow which will take me another step nearer the to that light.😊



    ArleneA, my infusions take 60-90 minutes each time. I just wont hurry it up from now on.

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

    Yeah BCBarbie...that should get you through at least 3 more months!  Glad you got an acceptable resolution!

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  • BronwynJulia
    BronwynJulia Member Posts: 10
    edited September 2012

    During herceptin treatment my Wall Motion scores dropped into the low 50s.  I researched online and found that this effect is similar to congestive heart disease, and that all people with CHD are deficient in CoEnzyme Q10.  In fact, once you get into your 40s your stores of CoQ10 begin to decline.  So I started taking CoQ10 while still getting herceptin and my score went up.  When I finished the course of herceptin my score was higher that it was when I had begun.  Needless to say, I still take CoQ10 daily as a part of my supplement routine.  A good starting dose is 100mg/day and I worked up to 200mg/day which is what I take now.

    Here are my Wall Motion Test numbers:

    Before treatment baseline Oct 30, 2008: 63%

    the following Feb. and July of 2009 : 55 and 53% resp.

    With CoQ10: Sept '09 and Jan '10: 59 and 57% resp.

    After last treatment of H. Feb.'10: 64%

    I told my G.P. about this and she said I had healed myself.  It is never too late to begin supplementing with CoQ10.  I hope this helps. 

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

    Hmmm.  I've never heard of wall motion scores.  Assume it is pumping or EF.

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

    Bron,

    I did CoQ10 supplements for a long time.

    No dice.

    Didn't do squat for me.

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  • bcbarbie10
    bcbarbie10 Member Posts: 319
    edited September 2012

    I went to today and had my taxotere#3/herceptin#6 combo.my onc says he is fine with my EF of 58 and seems likely i wont have echo repeats in the very near futute.



    I remembered asking him once about coQ10, told me it's good for the heart though he didnt want me taking it while still on taxotere as its anioxidant property might interfere with he cytotoxic effect of the chemo. He said to just start taking it a month or two into the herceptin only part. Each dr has his own opinion so better to ask yours with any form of supplement if they go well with them. Tho this onc of mine let me take Vit C daily as long as i dont go over 500mg.

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

    My cardio says he is ok with the Coq10 but says the jury is still out on its effectiveness.  I was taking it during Herceptin and my EF still dropped so no longer take it but might start again.

     Picking up Evening Primrose oil today.  Excellent supplement!

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  • bcbarbie10
    bcbarbie10 Member Posts: 319
    edited September 2012

    ArleneA, the gyno who discovered my bc advised against evening primrose for er/pr + bc's. Said black cohosh is safer. Havent tried it yet though. I believe it relieves the hot flashes too.



    Im thinking of trying the coQ10 after im done with taxotere. When it can do more good than harm.

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

    Thanks BCB.  Before I start the EPO, I'll ask my onc. 

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