Herceptin Heart Attack

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  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited May 2012

    Arlene, I chose to forgo chemo and tx. The reason for me to even do herceptin for early  stage cancer is that my biopsy cut most of the tumor out leaving 1.8 C of the idc her2+++ for 3 months before mx. I feared possible seeding. From what my oncologist and the cancer nurses said herceptin would be a breeze, but not so for me. I'm hoping the smaller doses, and drinking lots of fluids the day of infusion will make the treatment easier for me as well as help my heart. After my second infusion I begin taking Qc10 (?) not sure I got it right. I believe that is what has stabilied my heart the last 2 infusions although I still have those PVC'S.

    Grimbol, My oncologist said I have a little arthritis although other than my right arm, I am not experiencing artheritic pain or is my body deformed, yet. I understand about being concern about every ache and pain. Before bc, I never thought about pain, but now if it last for more than 2 weeks cancer comes to mind.  You can get LE from SNB.

    A general x-ray doesn't show up everything. I would ask for further test just for peace of mind. There are women on the boards who after screening shortly discovered they had a Progression of cancer. It's tricky.

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

    yes- you can get LE from a SNB.  

  • Grimbol
    Grimbol Member Posts: 326
    edited May 2012

    Ok thanks. Its actually been easier again the last couple of days, but i will pursue getting more tests. This week has been weird, Ive had nose and mouth sores again, plus some other slightly strange sensations, but im sure things will improve again.

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

    I think reporting the heart problems is important.  Thanks for that info!

    I plan to ask my Oncologist if he reported it.  I think he probably did.  The military is fairly disciplined when it comes to stuff like that.  But I'm CHECKING!

    Have a great weekend ladies. 

  • Denise-G
    Denise-G Member Posts: 1,777
    edited May 2012

    I've learned alot from this thread.  Thank you.  Finished Taxol/Herceptin last week.

    Went for first "alone" Herceptin today and MO said no, ECHO not good enough.  Take a month off

    and repeat.  He and Cardiologist believe it will reverse.

    Of course, I was fearful, but this thread helped.  Thank you all.  

  • kdking
    kdking Member Posts: 73
    edited May 2012

    Well I got the results of last weeks MUGA...my EF is now down to 35. ( was 37 a month ago) so my onc has said no more Herceptin for me. I was so sure my EF would have gone up since I have been off Herceptin since march 6. This is very frustrating to me! He told me he would like for me to see another onc at University Hospitals in Cleveland. I go there next wed.

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

    Kd,

    That stinks!!  I'm so sorry.  You must be so frustrated.  Don't lose hope.  There is a chance the new Onc will be able to spin something out of this mess that will work for you.

    I pray your heart will rebound stronger than EVER!

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited May 2012
    Kdking that does suck.  Sending positive energy that things turn around for the better!!!! 
  • camillegal
    camillegal Member Posts: 16,882
    edited May 2012

    Im sorry KD u have all this to go thru.

    This has been quite an informative topic--I certainly didn't know all this stuff--I would get a MUGA every few months but it was always OK so I never inquired what it all was about. All of u have been thru so much with Hercetin, I'm so sorry.

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

    KD- sorry to hear your news.  Maybe the new MO will have something else for you.  I will say that I feel a lot better about having to stop herceptin now than I did in Dec and February when I was told I couldn't have it any more.  For me, time did give me a different prespective and some peace. I hope that you get better news in Cleveland. If nothing changes, I hope that you can find peace with time as well.  Hugs to you.

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

    You all may well kno this already...but Cancer Treatment Centers of Am put me on CoQ10 and Melaton (20mg) last October.  I was on Herceptin weekly and now just every 3 weeks since May 23 last year.  I believe in those suppliments, I've had heart issues, one time EF too low, but came back up w/in 3 weeks (this was before aforementioned suppliments) since then, my MUGA shows EF steady.  May be of interest to some of you.  In the meantime, keep fighting....find something to smile about everyday...and kno that you are all in my prayers always!

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

    So sorry to hear KD...but LETS HOPE it starts to bounce back quickly. 

    Mema:  Interesting info about the COQ10...all my docs said it was unproven to I quite taking it...guess I'll start again as it sure can't hurt.  Thanks, Arlene

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

    Hello ladies!  I hope you all are enjoying your holiday weekend!  I ran across this article that talks about heart damage from Herceptin in real life, not just in trials.  It's a very interesting read.  Looks like about 20% of women will have some low level (Gr I) heart damage from Herceptin (at least in this study/review they did)...but the severe heart failure is still around the low 3 or 4% we hear quoted.  And, the other interesting thing they found is that most of the time the damage is seen in the first 3 months.  This may be old news to some of you, but hopefully interesting none-the-less.

     Trastuzumab Adjuvant Chemotherapy and Cardiotoxicity in Real-World Women With Breast Cancer


    Abstract

    Background

    Adjuvant trastuzumab therapy improves survival of human epidermal growth factor receptor 2 (HER2)-positive women with early breast cancer (EBC). A careful monitoring of cardiac function is needed due to potential trastuzumab cardiotoxicity (Tcardiotox). To date, the incidence, timing, and phenotype of patients with Tcardiotox in clinical practice are not well known.

    Methods and Results

    A total of 499 consecutive HER2-positive women (mean age 55 ± 11 years) with EBC treated with trastuzumab between January 2008 and June 2009 at 10 Italian institutions were followed for 1 year. We evaluated incidence, time of occurrence, and clinical features associated with Tcardiotox. Left ventricular ejection fraction (LVEF) was evaluated by echocardiography at baseline and at 3, 6, 9, and 12 months during trastuzumab therapy. Tcardiotox was recognized in 133 patients (27%): 102 (20%) showed asymptomatic reduction in LVEF of >10% but ≤20% (grade 1 Tcardiotox); 15 (3%) had asymptomatic decline of LVEF of >20% or <50% (grade 2); and 16 (3%) had symptomatic heart failure (grade 3). Trastuzumab was discontinued due to cardiotoxicity in 24 patients (5%) and restarted in 13 after LVEF recovery. Forty-one percent of Tcardiotox cases occurred within the first 3 months of follow-up, most prevalently in older patients with higher creatinine levels and in patients pretreated with doxorubicin and radiotherapy.

    Conclusions

    In clinical practice ,Tcardiotox is frequent in HER2-positive women with EBC and occurs in the first 3 months of therapy. Cardiac dysfunction is mild and asymptomatic in the majority of patients. The interruption of treatment is a rare event which occurs, however, in a significantly higher percentage than reported in randomized clinical trials.

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited May 2012

    Interesting dancetranc- but...there are some here on bco, who had to stop after several months due to a sudden lower EF. I wonder why the studies don't mention sudden heart paplitations when on herceptin? They only seem to be concerned about the EF. My younger sister, who had a heart transplant listened to my heart and said my heart palpitations is what her heart sounded like when it began failing. The whole erratic heart feels scarier than the EF that I don't notice.

    I had a heart reaction after my first infusion. I am cautiously continuing the herceptin by doing weekly infusions over 90 minutes rather than 30 minute infusions. I am skipping this weeks because I have the flu.

    I am questioning why those who have early stage cancers have to take herceptin for a year? I have no problem doing it if it is what I have to do to stay cancer free. But, I wonder ... when they put herceptin antibodies in you, why doesn't your immune white killer cells get the message and develop their own antibodies against Her2+ protein cancers? I also wonder if herceptin locks onto all our her2+ cells flagging our immune system to kill the good cells with her2 as well? If this happens herceptin is sorta like chemo. I wish I understood the dynamics of herceptin better.

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

    Thought I'd pop in to say hello.  Looks like no one has been here for awhile. 

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

    BTW, onc has ordered another MUGA...won't be going back on Herceptin but she wants to check my status.

  • achpurple
    achpurple Member Posts: 290
    edited June 2012

    I do still come here to see what everyone's EF has been doing.  Just had my first echo since finishing Herceptin in March so I'm waiting for the call to know if my EF is still the same.

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

    I appreciate the updates....as we get further out, the updates will be farther apart, but I hope you will continue to post when you get new info....something may help the rest of us, and frankly I'd like to know what happens with each of your hearts.

    Much love.

    Tonya

  • Amy2522
    Amy2522 Member Posts: 3
    edited June 2012

    I am new to this site.  I have been receiving herceptin since March...a total of 10 doses.  My MUGA scan before chemo was normal...over 50%.  My recent MUGA scan, just yesterday was 29%...alarmingly low.  My oncoligest put me on beta blockers and I will be visiting a cardiologist in the near future.  I am just looking for advice, has anyone walked this path?  Do I have any hope of my heart function returning? What time line seems reasonable?

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

    Amy,

    First of all I am so sorry to read this. Many of us here have suffered from cardio toxicity due to Herceptin.

    The "good" news is, women who have an immediate drop (and you would fall into that group) at the beginning of Hereceptin tend to get their EF back, recover 95% of the time.  Some even recover enough to re-start Herceptin, and for some strange reason often have no real decline after re-starting...it is bizarre.

    In my experience, your Onc will take you off Herceptin for up to 3 months to see if the heart meds help you rebound.  There is really nothing they can do for it but wait and watch.

    They will likely monitor your progress and if there is enough improvement (usually over 50% EF) they'll recommend re-starting Herceptin.

    If that happens, you might ask for it to be given as slowly as possible, in smaller doses, and weekly instead of every 3 weeks.  There are women here who have had success with that method. 

    When my heart didn't bounce back after 3 months off Herceptin, my Onc stopped it completely.  He said there is a window for herceptin to be effective, and any more than a 3 month break isn't researched yet, so he wouldn't continue it.  (I see a military Onc, but have read lots of civilian Oncs don't care about the lack of research for women who take a break more than 3 months and will continue it.)

    The "bad" news is, research shows the longer you go without EF improvement, the more likely it is permanent.  My Onc uses the 6 month marker.  Once I hit 6 months with no improvement he said I may fall into the 3-5% of women who experience damage at the cellular level of the muscle, and there is no recovering from that.  The cardiologist told me to be "prepared" to live with a compromised EF the rest of my life, but he wasn't ruling out recovery...it just isn't very likely.

    29% is really low.  Super low.  I know medicare will authorize a pace maker at 35% (my Uncle has one)....

    When finding a cardiologist I recommend finding one experienced with Herceptin.  Or at the very least chemo.  But frankly, there doesn't seem to be much difference from what I've read here in tx.  Maybe in how they run tests...but the tx seems to be...pills.  (Which haven't done anything for me.)

    Good luck to you. :)

  • serenitywisdom
    serenitywisdom Member Posts: 191
    edited June 2012

    Hi

    Have not posted for awhile.  I had most of the herceptin, missed 2 treatments total but it took about a year and half to get most of the herceptin since they started and stopped and started and stopped again the herceptin.  These problems did not start until after I completed the TCH .  Turns out a year of herceptin is arbitrary I think-  No one has really done the research to say that a year is as good as 1/2 year vs 2 years.  They just ran the clinical trials on one year.  

      I am still taking an ace inhibitor and beta blocker and baby aspirin.  Doing well post reconstructive surgery April 11.  I am finally going to get a real bra this afternoon after not having the girls match since Jan 2011.  My cardiologist plans to see me in July and do another stress echo.  Maybe I can get off of the cardiac meds since I am no  longer on herceptin-stopped it in April . I am still tired but not sure if fatigue is due to  stress due to  dramatic change in marital situation ) , being on cardiac meds (they can make you tired), permanent heart damage?? , post chemo  treatment??, having my thyroid out last year just before chemo??, or arrimidex (who knows what this  estrogen depleting drug does to energy??)   If you have other medical  issues it is hard to know what is the  impact on the heart is  vs chemo vs others drugs etc etc. 

    The good news is that the cardiologist told me I could go hiking in mid July as long as I train in advance.  I plan to hike 7 days in  high Sierras  8-10 miles/day for a vacation.  I will see how I do before on other hikes before I do this however.  so there is life after herceptin, chemo etc etc.  Have a good wkend everyone.

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

    Hi Serenity:  Nice to hear from you.  Sorry about some of your news here but everything will work just fine.  Sounds like you are working to get things back to 'normal' and planning your hiking trip....that is awesome.

     The Herceptin is such a tough one....as everyone knows, I had 10 txs and doctor wanted to start me back and do another 4 but I was not so gung ho on that especially after the drops.  I'm having another MUGA (she wants a MUGA vs Echo this time) but I'll have to deal with my decision.  Just don't want to risk my heart.

    Take care and keep in touch!

  • achpurple
    achpurple Member Posts: 290
    edited June 2012

    I just had my first echo since completing Herceptin and my heart is back up to 60%.  Was 60-65% when I started, then went down to 50% for the last several treatments and now back up.  Still have palpitations, but mostly when I drink caffeine or am not properly hydrated.

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

    WOO HOO Achpurple!!  That's SO AWESOME...I'm so happy for you.

    Good news. 

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited June 2012
    That is awesome achpurple!!!!  
  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited June 2012

    That is great news achpurple.  Nice to see news like this.

  • serenitywisdom
    serenitywisdom Member Posts: 191
    edited June 2012

    Achpurple I am very happy for you.

    I am starting training to do  7 day hike but got so fatigued just walking up a hill yesterday not sure if I can really get fit in one month.  Today I did a brisk walk about 3 miles in one hour .  It felt good.   I think I will ask the cardiologist about doing the MUGA or stress echo before the  hiking trip and plan to take out trip cancellation insurance just in case I am not fit enough to go hiking in  8-10000 ft elevation.  .  I think we really need to listen to our body in terms of recovery.  I have heard that hiking is good for the heart but do not want to totally overdo it.   Good luck to you all

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

    Serenity,

    If exercise is good for the heart, then my heart should be healed by now!  lol  I workout 6 days a week and have for YEARS, even during chemo and rads. 

    I hope you are able to go on the hike.  IT sounds so fun and exciting...challenging...

  • serenitywisdom
    serenitywisdom Member Posts: 191
    edited June 2012

    Dear TonLee,

    Thanks for your words of encouragement on hike.  I need to get really serious about training, if I am going to do this hike,  cause I am not nearly as fit as I need to be to go up to 8-10000 ft elevation.  I have episodes of sweating and feeling weak still.  Also have gained about 30 pounds since doing chemo, and herceptin and having had the thyroidectomy last year just before the chemo started.  At this point, I am not  sure if it is my heart or is it the arrimidex which I have been on for about 3 months. that cause the fatigue sometimes and the hot flashes/sweating.    I was told that arrimdex can cause hot flashes/sweathing but also a heart issue could do this too,  I think??.  I am very glad to be rid of port since April 9 and no more herceptin.  Just to be on safe side I may ask my cardiologist to  do a MUGA or stress echo before I go on the hike.   In any case, whether I do this rather challenging hike or not, it is good to exercise and hopefully I can lose some of this weight. Your physical activity level is an  inspiration to me TonLee

    Does anyone know if cardiac meds can cause weight gain or if herceptin causes weight gain?   

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

    Somtimes cardiac meds can cause weight gain but that is mostly due to the fact they make people fatigued and we are not as active as before.  Having your thyroid out probably doesn't help as that really can effect your weight if your hormone levels are off.  Also, I have a few friends who are on Arrimidex and they definitely had hot flashes and did not feel like themselves while on it.  YOu have a lot of factors that are probably contributing towards your fatigue. It is a good idea to check back in with the doctors. I hope you start feeling better.  I am visualizing you on your hike and can't wait to hear about your adventure. 

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