Herceptin Heart Attack

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  • sewingnut
    sewingnut Member Posts: 1,129
    edited December 2011

    I asked my Onc about the port thing.  She said it can come out as soon as I'm done with H. It has been a pain since day one, literally, my bra strap rubs the edge of it.

  • serenitywisdom
    serenitywisdom Member Posts: 191
    edited December 2011

    Ton Le- Congats on  no more chemo.  I totally understand about the desire to get a port out.  My sticks out, is very visible, rubs against the seat belt ( inow have a pad around seat belt to prevent this).  I  was even considering having port removed when I had my breast reconstructon  (even though herceptin still might be done ) after the reconstruction.  Good luck with port removal

  • TonLee
    TonLee Member Posts: 2,626
    edited December 2011

    I wonder if the protocol on port removal is changing?  I've heard on this board that they can't put the port back in the same place.  Will ask my surgeon about that when he removes it.  Anyway, seems like at the beginning of this (for me) everyone on my care team was saying 2-5 years...now a year later it's all about GETTING IT OUT...which I like...but wonder if it is a local hospital policy change, or a larger movement.  Hmmmmm

  • nora_az
    nora_az Member Posts: 720
    edited December 2011

    TonLee.....

    I agree with everyone else here. The body is very resilient and with your exercise regime I think you'll get some if not all of what you lost back.

    You'll enjoy the port being out!!! 

  • serenitywisdom
    serenitywisdom Member Posts: 191
    edited December 2011

    Hi,

     Does anyone know if you need to be put under general anesthesia to get the port out.  I dislike idea of so much anesthesia 

  • Omaz
    Omaz Member Posts: 5,497
    edited December 2011
    serenity - Many get their port out in the doctor's office!  
  • ArleneA
    ArleneA Member Posts: 1,309
    edited December 2011

    Hi ladies:  Finally made it over to this blog.  Thanks for starting it TonLee.  My Herceptin has been stopped again.  After chemo #1 I had the MAJOR heart palps and ended out in the ER two days in a row.  First time, electrolytes were way out of whack and the second time, just the heart palps and they gave me a large dose of bp medicine that I am still on and no palps.  Went through 2 24-hour Holter monitors, a 7-day Holter, EKGs, and the miserable stress test where they inject that crap in you and it runs through your arteries and basically stresses the heart.  All tests were completely normal and back to Herceptin I went and the cardio said go back to runninng.

    My EF started (prior to chemo for the baseline) at 77.6, then down to 66 and then 60 (in August) and now 50.  That has my onco nervous and he is stopping Herceptin until I see another cardio (since all my treatments and cardio workups were in Nevada and now I'm in Florida).  Waiting now to get in with the cardiologist and am told it may not be until after the first of the year.  Geez.

    In the meantime, I'll keep working out.  Having trouble getting back into running but doing long, long walks almost every day and actually feel great when working out.  I've had no swelling at all except right after my first chemo.

    BTW, my onco says no one really knows how long someone should be on Herceptin and he feels pretty comfortable that I made it to #11.

    Thanks for starting this blog TonLee.

    Arlene 

  • ArleneA
    ArleneA Member Posts: 1,309
    edited December 2011

    One thing I am noticing a lot of the last few weeks is dizziness which I'm assuming is due to the reduced heart function.

  • achpurple
    achpurple Member Posts: 290
    edited December 2011

    TonLee:  Did you ever ask your doc about Troponin levels?

  • TonLee
    TonLee Member Posts: 2,626
    edited December 2011

    Arlene,

    Glad to see ya!

    I have an EF of 48% (officially) down from 68ish %.  I get really dizzy if I stand up to fast, but exercise (I know..I sound like a broken record) really seems to help.  Maybe pumps the blood up there...lol.  But my memory is crapola.  I walk out of the kitchen with the water running in the sink!

     Achpurple,

    No I didn't ask about troponin levels.  I totally forgot. 

  • achpurple
    achpurple Member Posts: 290
    edited December 2011

    TonLee:  How could you possibly forget!  (Obviously I'm kidding because I can't believe sometimes that I even remember to breathe.)  I'm just really interested in the opinion of someone else's onco or cardiologist to compare to mine about troponin levels being a much better indicator of heart muscle damage.

    I finally decided my chemo brain reminds me of a small child when they're still in that "out of sight, out of mind" phase of life.  I started repeating what I'm going somewhere for until I get there.  Like "Going upstairs for the keys, going upstairs for the keys, etc. and it's annoying to do but it does work and at least I don't go upstairs 3 different times trying to remember what I'm doing up there.

  • Kay_G
    Kay_G Member Posts: 3,345
    edited December 2011

    I will try to remember to ask my cardiologist about it when I see her on the 22nd. I hope that's correct because she tested that and it came back normal for me.

  • ArleneA
    ArleneA Member Posts: 1,309
    edited December 2011

    Hmm... never heard of Troponin levels.

  • serenitywisdom
    serenitywisdom Member Posts: 191
    edited December 2011

    Hi,

     I too never heard Troponin levels mentioned however I saw a cardiologist who had no experience with herceptin.  I will ask the cardiologist in a few days who has been researching about herceptin and cardiotoxicity  about troponin.  .  After doing a very quick literature review it does seem that there is a higher risk of cardiotoxicity if you took anthracyclines and herceptin  vs  TCH .  Here is what one article said about troponin.  It makes sense to me to ask our cardiologists about this test.  But I am guessing that it may not be standard practice for them to order this test.  

    The other cardiac marker thought to be sensitive for early heart damage -- high-sensitivity troponin 1 -- also significantly predicted cardiotoxicity at six months (P=0.006), the researchers reported at the American Society of Echocardiography meeting here.

    Re getting dizzy.  How is everyone's blood pressure.??  I think that when they put you on beta blockers it might cause BP to  drop and/or lower your pulse  and this might cause dizziness.  I am routinely monitoring my BP because I am not even sure that I needed to take beta blockers and who knows what they are doing to my system.    

    Chemo brain is real.  I want to start doing brain exercises There is a software program out there called brain fitness which I ordered /  But I keep forgeting to do it.  LOL.  Just like walking which is important for overall health I need to do the brain fitness.  Will keep you posted on what the research cardiologist says about all this.

  • jackboo09
    jackboo09 Member Posts: 920
    edited December 2011

    Have been following this thread with interest. I share the frustration associated with the 6 months v 12 months Herceptin treatment. I live in England and just thought it might help to report my experience following TCH.

    Currently done tx 11 and due for tx 12 on Dec 23. My oncologist seems just as keen as U.S doctors to keep me on track and complete all 18 infusions. I am being monitored every 3 months with the muga test. Baseline EF was only 53!!!! Ist drop to 47 but most recently recovered to 53 after taking Ramipril blood pressure meds (2.5mg)

    I so wish the study results could be published in Dec as I could then make a more informed decision about continuing this treatment. It may only be a small % of women who have heart problems on Herceptin but that is cold comfort to those of us who find they do. 

    My next tx is 2 days before Christmas and I know i will feel crappy for the next 7 days: heart palps, harder to breath, whole body muscle aches and fatigue. With each tx SE's get worse. 

    Sorry to rant, but I just want all of this to be over. My instincts tell me that my body has had enough. Im almost hoping that my muga  (prior to 23 Dec) shows a slight drop as at this point I would welcome the break. At least I could see if my heart improves! 

    Please keep posting any info regarding the conference in Dec.We Brit gals feel somewhat left behind in the most current developments.

    Best wishes to everyone

    Liz

  • Kay_G
    Kay_G Member Posts: 3,345
    edited December 2011

    Good luck jackboo. Sorry to have you join us, but it is great that we can compare symptoms/treatments/responses. Thanks TonLee for starting this page. I know what you mean about being grateful for the break. My hair has been growing back since taxotere at the beginning of June, yet I have very little to show for it. I should have had herceptin #11 on nov. 30, but got a herceptin holiday as they cll it in my clinic. Since nov 30, my hair really seems to be growing faster. I hope I can get a lot of growing in before getting back to herceptin. And I have a herceptin infusion scheduled for dec. 22 if the next echo has improved, so i can relate to your thoughts of waiting until after Christmas too.

  • Kay_G
    Kay_G Member Posts: 3,345
    edited December 2011

    Serenity wisdom, that is interesting. Does the cardio toxicity usually occur right at six months? Mine did, right after treatment ten. I have not been watching blood pressure, but I am not getting dizzy, so I suspect it has not dropped.

  • Omaz
    Omaz Member Posts: 5,497
    edited December 2011
    jackboo - How fast do you get your infusion?  If it is over 30 minutes ask if they can slow it to 90 minutes, the slower infusion helped me out with the se's.
  • TonLee
    TonLee Member Posts: 2,626
    edited December 2011

    Kay,

    Looking back my SE could have started almost right away with Herceptin.  I attributed it to Taxol, or general chemo blahs. My MUGAs show a steady decline NOW...(the radiologist went back in and read them all personally because there was an equipment change, software change, and other things the first 9 months.....by the time they caught that the EF was 48%, it'd been that way awhile.

    From what I've read on line, it can happen anytime.  No one is predisposed to it.  There is no way to tell who will get this SE and who won't.  Some women who have this heart issue the first time with it, take it a second time for recurrence and don't.  It's a weird thing.

  • kathleen1966
    kathleen1966 Member Posts: 793
    edited December 2011

    This has been a very interesting thread to read.  My ejection fraction went down to 45 (never had my herceptin cancelled) while on Herceptin.  At my last echo, it was back up to 55, the place where it started.  This is a low normal.  I also have "lower" blood pressure. I finished my Herceptin in September.  I have had a couple of times when my heart has raced. My oncologist told me the ejection fraction would go up on its own.

  • ArleneA
    ArleneA Member Posts: 1,309
    edited December 2011

    Ladies:  I'm on hold for Herceptin #11 until I see a cardiologist and I can't get it for 3 weeks...crazy isn't it.  Since there are no studies on the actual time required for Herceptin and that the year is totally made up and a guess, I'm not too concerned.  I'm thinking it could even be one treatment.  Who really knows.  Since I made it to #10, I feel ok but if they can get me back on it and finish the year, guess that will be great too but in the interim, I think the port is going!

  • serenitywisdom
    serenitywisdom Member Posts: 191
    edited December 2011

    Arlene and others,

    Interesting you brought up what is the appropriate time length to take herceptin.  I just had this discussion with my onc today since my herceptin has now been stopped for almost 2 months.  I have had a total of about 7 months of herceptin (once every 3 weeks).  I asked her what delaying or stopping herceptin altogether means in terms of potential re occurence.  She said it probably meant nothing.  I asked her how they came up with a year to take herceptin and whether 3 or 6 months would yield the same results.  She said they haven not done the studies yet to determine the appropriate length of time to take herceptin.  It could be that the USA drug companies want a year to get more money for drug development.  They are studying this issue of time length now but results are not in.

    I have now seen 2 cardiologists and one who has published about herceptin and is very knowledgeable.  Bottom line: the cardiologists are not certain if I have heart disease and it is being aggravated by takeing chemo/herceptin or if all my test results are off due to anemia induced by chemo, chemo drugs/herceptin, .  Only way to know more is to take an angio gram.  One cardiologist suggested doing that and the other said no.  One cardiologist put me on a beta blocker and the other cardiologist added an ace inhibitor.  These apparently are cardio protective against bad effects of herceptin.  Also put on baby aspirin. 

    Interestingly the cardiologist who was really knowledgeable on herceptin said not to worry much about the 19% drop I had on the MUGA.  He said that since my EF was still in normal limits, this was not  concerning.  My onc was a bit puzzled since the literature says to stop herceptin if greater than 15% drop.    

     One cardiologist said not necessary to do any more heart tests, just start herceptin again and get checked with MUGA or stress echo after 2 infusions of herceptin.  My onc said she wants to test me with an echo now before I retart the herceptin.   

    Weight gain also puts you more at risk of heart disease and cancer.  But here is the irony,  the beta blockers add on weight, I gained weight from the steroids and also thyroid taken out just before chemo,   I think herceptin adds on weight and one cardioloigst told me not to do much exercise.  The other  cardiologist told me the more you exercise the better.  I plan to do exercise in moderation.

     hope this information is helpful to everyone. 

  • Kay_G
    Kay_G Member Posts: 3,345
    edited December 2011

    Thanks for the info serenitywisdom. I get another echo on Monday and see the cardiologist on Thursday. I will try to get her opinions and post them too. I know at the first visit I had with her, she said it was her job to get me to safely finish the year of herceptin. I am not sure what my onc thinks. I finished 10 txs, and she told me she was glad to hear me say that I didn't want to survive cancer just to succumb to heart problems. But she did schedule me for a herceptin infusion on thursday after the cardiologist visit if she okays it. My onc had a baby on Nov. 30, so isn't around to question her about it. I would feel a lot better about it if I knew what she thought, but I am getting ahead of myself before seeing the echo any way. Fingers crossed for good results.

  • ArleneA
    ArleneA Member Posts: 1,309
    edited December 2011

    Serenity: I sure don't mean to scare you but check on the Ace inhibitors as I've read the can cause breast cancer.  I believe Susan on the Cold Caps blog mentioned this.  I'll go google it and see what I can find also.  I

  • ArleneA
    ArleneA Member Posts: 1,309
    edited December 2011
  • TonLee
    TonLee Member Posts: 2,626
    edited December 2011

    Arlene,

    Good link! Thanks!!

    Serenity,

    There does seem to be conflicting information about things....I'm just going with my gut on this.  I'm not taking any Ace Inhibitors, but am doing baby aspirin, exercise, and wait and see.  I have another MUGA in 3 months.  If things are looking better I'll hae to take another approach.

    Thank you so much for sharing the info!  I hope others will provide their info as well.  I plan to.

  • Omaz
    Omaz Member Posts: 5,497
    edited December 2011

    Hi, take the results of the ACEi study with a grain of salt - there were only 137 women in the group that was taking the ACE i only  and they were more likely to have a high BMI than the comparison group.  In addition they did not adjust their initial 'models' for node status in the reported results - later in the results (in the text at the end) they note that when they do adjust for node status the increased risk associated with the ACEi was not longer significant.  I talked to my onc PA about it and she said not to be concerned since the finding has not been reproduced yet and it was a small sample size.

  • ArleneA
    ArleneA Member Posts: 1,309
    edited December 2011

    TonLee:  Thanks.  I just seemed to remember this from a post by Susan on the cold caps blog and it hit me when I saw Serenity's post.  We have to look out for each other.

    What I find odd is that even though my EF is down to 50 (where I understand most start), I don't feel too many symptoms of reduced function.  I'm still speed walking (haven't been able to get back into running though) 5-8 miles almost daily. 

  • Omaz
    Omaz Member Posts: 5,497
    edited December 2011
    Here is a link to a new study that addresses the issue of ACEi and recurrence.  In their review they state: ACEI/ARB use was protective against breast cancer recurrence (HR 0.60, 95% CI 0.37-0.96)
  • TonLee
    TonLee Member Posts: 2,626
    edited December 2011

    Thanks Omaz!

    Arlene, the biggest difference I notice is in endurance training.  I hit a wall.  My muscles aren't exhausted they're just, I can't really explain it, but I can tell they are not getting the oxygen required to perform optimally.  Also my thighs are swollen.  Nothing huge, but I've always had awesome leg definition in hamstrings and quads, there is a layer of fluid over them now that indents when I press on it.

    Also, at night I'm tired.  And I've lived my entire life with a surplus of energy...never running out...no matter how little sleep, how little food, I'm the friggin energizer bunny....or was, now though at night when I go to bed...I'm tired. 

    The one benefit is I practically pass out after I get in bed. :)

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