Herceptin Heart Attack

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

    I am just noticing fluid retention now too, but it's in my feet and calves, not my thighs. Not sure why it is starting now. I'm also noticing I get tired easier. Was supposed to get herceptin #15 on Thursday, but am on vacation in Williamsburg, so won't get that until April 12th. See the cardiologist that day too, so will see what she says. And see if the probNP has changed on the higher ace inhibitor dose. Good luck with radiation kdking!

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

    I'm seeing a new cardio tomorrow and hoping he's more familiar with Herceptin.....not feeling that warm and fuzzy though.  Not getting the swelling but I've been off Herceptin since end of November...

    I've been  having a horrible time with my eyes....got a cold and pink eye and had a reaction to the Bactrim and had to stop...and this morning, poof the pink eye is back.  BOO!!!

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  • serenitywisdom
    serenitywisdom Member Posts: 191
    edited April 2012

    Arlene- Re eyes,  are you having a lot of tearing, watery eyes  too?  I at first thought it was the taxotere  = taxotears  but then it continued after I finished taxotere.  I wonder if herceptin causes dry eyes which then might cause more eye infections??  I tried eye drops for "dry eyes" which ironically causes a lot of excessive tearing.  It kind of helped and it seems to be slowly going away.

    Ton Le- re swelling and fluid retention, from my nursing background I suppose that might mean heart is not pumping the way it used to which causes swelling.  Recommend elevating legs as much as possible when you are sitting down.  Also I am wondering if you have lymph nodes removed would that cause increased swelling?  .  My PT showed me how to massage  groin area and under arm to prevent lymphadema.   I am guessing that yours might be more related to heart function though.  It sucks  !!    Cancer vs heart damage!   The good news is that we are still doing well enough to complain and still can get some exercise.  I went for a 3 mile walk today with dog  but my MD  says I must get seriosly aerobic to lose the weight I have gained.  I do get tired walking up stairs much more than I used to.  

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  • jackboo09
    jackboo09 Member Posts: 920
    edited April 2012

    Hi Tonlee

    Wanted to tell you about my cousin Christine who also experienced heart issues following treatment. She was diagnosed age 49 with triple neg. She entered a trial for avastin as she wanted to be as aggressive as possible with treatment. At some point during the tx, she experienced shortness of breath and blue lips. She was a nurse and tended to under play symptoms but was admitted to the cardiac assessment unit. 

    They put her on meds which I presume are beta blockers (forgive my ignorance, I only know about ramipril) She is about 3.5 years out and her latest heart echo was 65. She gets tired but is well and active. (attends a gym)

    I hope this gives you some hope. I'm thinking of you. My heart dipped from 53 to 47 after the first 3/4 months of TCH. I am on Ramipril 2.5mg which I tolerate well and my latest echo was 59. It did go as high as 64. My onco plans to leave me on the meds for 3 months after I finish Herceptin (May 11th)

    Best wishes to you

    Liz

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

    Hey Serenity:

    My onc says the continual runny nose (my drippy eyes have finally stopped and so glad because mine was horrible) it is still residual from the Taxotere.  She said the Herceptin causes it too but more likely from the Taxotere. 

    So I went to the primary care doc for what I thought was the return of the pink eye and she said I 'just' have an infection in the skin over the eye but suggested seeing an opthamologist so seeing him this afternoon.  We can't win can we...:)

    Saw the new cardiologist yesterday and he didn't have much to say except to continue on all the meds and have another echo in 6 months...we'll see what the onco says about that because I'm betting she wants one sooner than that....she's so careful.

    Now, the dentist said I had calcium deposits in the jaw and sent me to an oral surgeon who said he saw nothing but thought he saw blockage of the carotid, so I mentioned this to my primary care doc and she shrugged it off.  Said if I really want it, she'd order a US of the carotid but didn't think it was necessary.  Again, I'll ask the onc about that too.

    Take care everyone, Arlene

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  • kdking
    kdking Member Posts: 73
    edited April 2012

    Good news..24 hr heart monitor results were good..no problems detected! So...I'm hoping my flutters were from the Taxol and not the Herceptin. Still scheduled for an ECHO on the 19th.



    Got weighed today and was down three lbs from last week! This extra weight is driving me crazy! Haven't tried massage Ton..sounds good to me though..worth a try!

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

    Serenity,

    Yes my leg swelling is from the heart...I know this for sure.  I haven't ever had any lower extremity lymphs removed though.

    Jack,

    My first cardiologist put me on a medication at half dose but I couldn't tolerate it.  My normal blood pressure is about 90/70 and my resting heart rate is 59.  Even on the smallest possible dose  brings my blood pressure down way too far.  I only tried one medication though, and he said the others were stronger....

    Thanks tho, I'm kinda secretly hoping that it will bounce back without meds but it may take longer... :)

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

    Hooray, my recent eye problem is only allergies.  Opthal doc gave me a cream for a few days and today it is almost 80% better. 

    TonLee:  I bet it bounces back on its own.  We must think positive.

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

    Great news on the eyes Arlene!  So happy for you :)

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

    Thanks TonLee but I still have this darn macrodegeneration 'starring' me in the face.  Didn't have that before treatment.  Oh well!

    Take care, Arlene

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  • serenitywisdom
    serenitywisdom Member Posts: 191
    edited April 2012

    Hi all,

    Just wanted to share that I am finally going to have my breast reconstruction (tissue expander out and implant in)  and reduction on the other breast so they will match up this Monday.  My plastic surgeon said I  will stay overnight since breast reduction is significant. It has been cancelled 2 times- once due to heart and once due to surgeon , so I am really ready.  I have to admit I am a little apprehensive more because of the heart issues.  But I suppose they would not do it if my heart was bad enough.  Has anyone had surgery since the herceptin impacted your heart?   

    Great news that tearing is decreasing. Arlene

    Ton Le- I bet that heart will bounce back, it will just take longer.

    Take care everyone 

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

    Serentiy,

    I had an Ooph about a month ago....no problems...they just watch your heart a little more I think.....good luck with the exchange!  I'm going to Texas in July to get mine done and can't wait to be rid of this PAINFUL TE.

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  • Omaz
    Omaz Member Posts: 5,497
    edited April 2012
    Good luck Serenity!!  Hope everything goes smooth as silk.
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  • ArleneA
    ArleneA Member Posts: 1,309
    edited April 2012

    Good luck Serenity.  We are thinking of you.  Keep us posted.

    Happy Easter everyone!

     Arlene

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

    Happy Resurrection Sunday to those who celebrate the day....and Passover to all my Jewish friends :)

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  • kdking
    kdking Member Posts: 73
    edited April 2012

    Just a little update..I had a MUGA done yesterday and am scheduled fr a stress test next Tuesday. Depending on the results, we will try Herceptin again soon afterwards. I will be admitted to the hospital the first time so I can be observed. Starting to feel the effects of the radiation!! I'm so tired!

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

    KD,

    Radiation kicked my butt after the 3rd week.  I had to go to bed an hour or two earlier most nights.

    Here's hoping your MUGA is good and your Herceptin can start again unencumbered!

    Today is my second day on Liprinosil AGAIN.  My Onc said we should try it one more time and I am only on 5mg.  Because of my Ooph my thyroid meds are off, which drives up my blood pressure, so this may be a benefit.....last time it dropped my blood pressure too low.

    Onc thinks it will help my heart, so I'm going to try and stay on it.  He didn't recommend an Ace Inhibitor for me because it causes the heart and metabolism to slow and athletes have severe performance issues on it.  He knows I won't take it if it means I have to be sedentary. :)

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

    TonLee:  Maybe I'm reading your post wrong but my understanding is that Lisinopril is an ACE.  I was on it for years for bp but it causes a cough in some people so I had to go off of it.  Not to be an alarmist but I read an article here  that Ace's can cause bc.  Need to find that one again.  I wish I could go back on the ACE because I had way less SEs from it than what they have me on now to build the heart.  I was so able to run half marathons so easily on the Lisinopril but not on what they have me now...so I think you'll do well on it.  What I'm on now really slows the heart and metabolism.

    Good luck KDKing.  I had the stress test too. 

    Arlene

    Just found the link:

    http://www.breastcancer.org/risk/new_research/20110422.jsp

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  • Omaz
    Omaz Member Posts: 5,497
    edited April 2012
    Arlene - I remember that article and talked to my onc PA about it and she said it was a very small study so I shouldn't be worried.  I take an Ace-i.
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  • kdking
    kdking Member Posts: 73
    edited April 2012

    Thanks for the well wishes! Ton..was just curious why you are going to Texas for surgery..? I know you are an Ohio sister :)..did you have all your surgeries there? Just wondering.

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

    Hey Omaz:  Glad to hear it.  These studies can make us crazy.  I know they make me nuts.

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  • Omaz
    Omaz Member Posts: 5,497
    edited April 2012
    Arlene - Are you holding a light saber in your avatar?  Are you a secret Jedi?
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  • ArleneA
    ArleneA Member Posts: 1,309
    edited April 2012

    That is funny Omaz.  I was out showing homes and the kids had left swords in the house and I was goofing around and my husband took a picture.  I was hoping it would show up better.  Arlene

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

    Arlene,

    You are right, it is an Ace Inhibitor....but whatever you're on is what he said he won't put me on...is it still conisdered an ace inhibitor?  I probably heard that backward.  Thanks for catching it :)  I don't think I will be on it long enough for it to hurt me.  I'm planning on 6 months, maybe a year if I tolerate it.  Or frankly as soon as my EF gets back above 60.

    KD,

    I receive care at a military facility.  My original PS moved to San Antonio and for continuity of care issues I am going there for the exchange.  The only other option my insurance will cover is a PS here that is just out of training.  I'm not comfortable with that.

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  • kdking
    kdking Member Posts: 73
    edited April 2012

    I understand Ton...was just wondering, thought you were overlooking some of the wonderful surgeons we have here in Ohio. My nephew is stationed in Texas:)

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

    Hey TonLee:  No they took me off the Ace and put me on this new stuff for the heart - the COREG which is supposed to help build the EF quickly and mine is going up.  Having another Echo next week so we'll see if he has continued up.  It makes me more tired than the lisinopril did.  But you sure don't want to mess with your bp dropping.  I think a few of here are on the COREG.

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

    Oh, COREG is a beta-blocker.

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

    Thanks KD.

    Since I busted open my MX a month or so after surgery, I kept an open wound the whole time on chemo, for several months...and my PS was right there with me...saw me every week, checked it, cleaned it, and did two revisions after my chemo was done.  I figure since he's been in there a couple time already, he knows what to expect, and since I had rads, he has to do some loosening....

    Of course my insurance isn't paying for the trip...I have to do that...but worth it!  Don't know what I'll do for 2-3 weeks in San Antonio in July though...details!  Gotta get em worked out.  Last time I was there it was August of 1986!  So hopefully it won't be quite as HOT.

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

    Had treatment number 15 today. The troponin and the probNP were good, I guess the higher dose of enalapril helped. But my BP wuss 79/49. No symptoms though, so they think that's okay. And liver enzymes are up so have to get that retested next week. It's always freaking something. Can't wait to be done this.

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

    Coreg was the medicine I couldn't tolerate. I feel asleep on the couche while I had the 4 kids home by myself. I told my doc I couldn't afford to do that.  They took me off that one and I have been on Metropolol ever since.  I am also on lisinopril. After my recent visit with the cardiologist, he doubled my lisinopril but couldn't do that with teh Metropolol because my pulse was too low (54).

     Kay1963- its great you are getting through your treatments.  

    ArleneA- I read that study as well.  My MO also told me not to worry.  I also remember reading somewhere that beta blockers help prevent BC so if you are on both an ace inhibitor and beta blocker there is no increase in BC risk.  I can' t remember where I saw that. Maybe in the same article.   

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