Herceptin Heart Attack
Comments
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Dance,
My first echo said my EF was 73% - my second one - after four treatments of herceptin 1 @ 3 weeks wtih T/C was 55 - my onc said it wasn't a true drop because my EF was artificially high due to severe anemia (due to significant blood loss when I had a blood vessel blow a week after my BMX) - my hemoglobin was less than half that of the bottom end of normal. I'm not entirely sure I believe her - but - my resting heart rate (now that hemoglobin is normal again) is 55 ish - I have no symptoms - and I hit hte cardio pretty hard - so I guess I'll wait and see - my next echo is early May - if it drops again - I've got some hard questions for my onc - since I haven't been anemic for at least a few months now. Ugh ! hate this crap - you've got to do irreversible damage to yoruself to prevent the bc from killing you - what a wonderful trade-off - also started tamoxifen today - can't wait to see waht fun that brings - Sorry - just feel like screaming sometimes...
Lucky
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Before I started Taxol and Herceptin (after my AC) I had a MUGA and my EF was 61...so I had a substantial decrease. Just FYI
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ArleneA: My onco ran plenty of troponin levels on me during Herceptin treatment, it's just a blood test. Yes, they do run them during heart attacks (my husband had the "widowmaker") but it's a good indication of muscle damage whether it's a heart attack or Herceptin treatment.
The lowest my EF has ever been and is currently 50 and I finished all Herceptin in March - but I had heart issues usually after each infusion to different degrees. Even ended up in the ER about a week after the last one in March and so far, even with the zillion tests they've done, it has not shown any heart damage other than lowering my EF.
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Thank you so much Kay. I actually think I am starting to tumble across a potential goldmine of information...including the troponin thing. That article I posted interviewed Dr. Daniel Lenihan at Vanderbilt University in Nashville. He is the president of the International CardiOncology Society of USA/Canada. I remember someone saying on here they wished they had a cardiologist who specialized in cancer isssues. Well here you go. They have a group just for that! If you search the member thing for USA you can see all the members in the US. Perhaps this will help someone on here who is looking for a cardiologist who specializes in this. BTW, you have to translate the pages into English via google or whatever pops up on your screen to do that. Oh, they also have a page where your doctor can write in their questions they might have about your case: link
There are also lots of other goodies - articles that look very interesting. Will post whatever I think y'all might find helpful/interesting.
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Wow luckyjnjmom...why wouldn't they do a repeat echo once your hemoglobin was up, to completely rule that factor out rather than assume that was the sole cause? A low hemoglobin will indeed increase your ejection fraction and heart rate, b/c as your said, your heart has to pump harder and faster to get more blood to your tissues - b/c their is less oxygen in your blood your tissues need more of it. This is why people who have low hemoglobin should not push exercise. They can have a heart attack if they push through it (not you, yours is up...but if it is down, like mine is right now, ya don't push it). I know this b/c I am a PT, and we hold treatment on patients who have low hemoglobin. I understand wanting to scream about always trying to choose the lesser of so many evils!
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Dance,
At my appt 2 weeks ago with Onc, he mentioned a trial going on right now that gives women ace inhibitors at the start of Herceptin...they want to see if taking it in conjunction might mitigate the cardiotoxicity. Since I'm done he didn't give me the paperwork...but most of his recommends come from the NCI.
Also, when I asked about slowing down my infusion of Herceptin...I was poo-pooed. But my cousin's Onc. (because of my heart damage, she told him about it) slowed hers way down. I've also read accounts on this site of women with symptoms who asked for the infusion to be slowed and their symptoms went away.
Here's my 2 cents. Since you are so worried about it, if I were you (and of course I'm not, and don't have all the info..but based on what is here) this is what I'd do knowing what I know now.
1. I'd ask to be put on an ace inhibitor. Since there is a trial doing this, it's not like you're asking for something other women aren't getting. They believe it is likely to protect the heart in women who are susceptible to damage.
2. I wouldn't take Herceptin in one big dose every 3 weeks, I'd go every week during chemo. (It's a pain but like I said, my heart didn't spiral until the big doses.)
3. If you must do it every 3 weeks for whatever reason, I'd make them slow it down to about an hour.
I think you are right to be concerned, and if your next ECHO shows a drop, you have real ammo to get what you want. But chances are, you won't have any problems.
You're right, on cheno you aren't going to be able to pinpoint symptoms. Looking back, it wasn't until I started Herceptin alone that I could see...OH! THAT is caused from Herceptin.....I can't really describe how it felt but I'll try.
It started as pain under my left rib cage. My Onc said it was stomach issues from chemo and put me on Prilosec. I stopped taking it because it didn't go away. It was just a nagging annoying pain..nothing schedule altering.
My biggest sign was, after I lost most the taxoterrible thigh pain...my thighs never went back to normal...they got smaller, but not normal. I kept waiting and waiting. I received a massage and the therapist said, "Your thighs are swollen. But I can manipulate the fluid up into your core. Do you have heart issues?" (After massage my thighs are literally an 1-2 INCHES smaller, I've measured! for about 24 hours, and then back to swelling.)
So I took that info to my next appt, was blown off.
The last Herceptin tx, it was about 12 hours later, I sat on my couch and my heart started pounding. Crazy, unignorable pumping....but it wasn't just beating hard, it was struggling..jumping around in my chest....have you ever worked out so hard you are so short of breath you are one step away from passing out? Like that....except my core temperature spiked up to 101-102.
I can be fairly thick headed, so after 4 hours of it, I took a tylenol and went to bed.
I should have went to the ER.
After that episode, I was due for a MUGA. And that is what I discussed in the previous post.
Hope that helps.
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Ton Lee, thank you - that helps very, very much. I took some notes and am making a list of things to discuss with my onc. I'm going to show him the new Cochrane review and will find the trials and also info on the other blood tests mentioned. He is great and so open to discussing things with me, and I really respect him so much. Not too many docs would put up with me. I question everything, and I know I can be annoying. I can't help this character trait...I try...hope I'm not driving the gals on bco crazy!
I'm still reading studies I found from that site I posted and am taking notes. I'll post anything new I learn. I thank you all so much for helping me be proactive in this matter!
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You sound on top of it! Please keep us posted!
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Dance, if I have learned anything from this whole ordeal it's you have to be your own best advocate! A lot of oncs just want to do the same routine for everyone..sometimes that's not the best option for you. My mom goes to all my apps w me and I know she drives the nurses crazy..lol but I couldn't have done this without her!
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Hello!!!! I had my follow-up appt with my onc today. I am on track for my next TCH next Tuesday.
I talked with him about the Cochrane review, which he hadn't seen yet (I expected that, it's very recent). I left him a copy of the abstract. At this point he still recommends I get the Herceptin, despite my small size tumor (risk/benefit ratio).
He is going to order the Troponin and proBPN bloodwork for me before each chemo. Woo-hoo!!! This was what I most wanted to accomplish.
I asked him about doing a special type of echo (low dose dobutamine stress - echo) b/c regular echo's have low sensitivity and poor predictive values. He did not feel the meds and stress of this test on my heart was warranted. I'm ok with that as long as I'm at least getting those bloodwork tests as my "back up" to catching any potential damage earlier (hopefully). I wanted to share this test with you guys in case it might be something that would be warranted in your case. The International Cardiology Society recommends it: Diagnosis of cardiotoxicity
I asked him about switching to doing Herceptin weekly, and he is considering it. Will discuss it further next week. I don't think it is going to be an issue.
I did not ask about doing Herceptin, say, for only 6 months b/c my tumor is so small (something I'm contemplating)...I figured...I'd cross that bridge when I get there...see how I feel then.
I did not ask about the ace inhibitors...I felt like I was pushing the limit on him feeling like I was trying to take too much control of my treatment (it's a fine line)...plus I'm not sure how I feel about it b/c I haven't had time to look at the side effects of ace inhibitors, the whole mechanism behind it, etc., etc. I am going to do some more research and will talk to him about it when I feel better versed in it! I just now found the trial and printed it out!
Ton Lee, have you ever looked into whether self-lymphatic drainage might help with your type of swelling? I have no idea - it may not even be safe to push extra fluid back to your heart all the time if the heart isn't strong - but perhaps it would be ok and is something you could do a little bit of every day that would keep the swelling down. Just a thought. A lymphedema therapist could teach you. I think it takes like 15 minutes a day.
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Dance,
I'm so happy your appt went so well!! WOO HOO!
Your Onc sounds like a good one.
It takes about 30 minutes of deep pressure massage to get my legs to drain...but yes they can be done manually...but there is no way I can do it myself...the amount of pressure it requires and the placement of my legs....I think it is more likely blood pooling there because of gravity and my heart isn't providing enough pressure to contrast it.
Anyway, thanks for the advice and sharing all your info with us!
I hope your Herceptin is uneventful, BORING even.
Much love.
t
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Thank you so much Ton Lee!!!!
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Here is an article I am reading I thought might be useful/of interest.
The art of healing broken hearts in breast cancer patients: Trastuzumab and heart failure
Chemotherapy-related cardiac dysfunction is classified as type I or type II. Type I is characterized by irreversible damage as inflicted by anthracycline and Trz-mediated cardiotoxicity. To some degree, the dysfunction is considered to result from myocyte apoptosis. On the other hand, Trz-related cardiac dysfunction is generally classified as type II, which is a category of reversible cardiomyopathy, following discontinuation of the drug (56). Studies indicate that unlike anthracyclines, Trz-associated cardiotoxicty is not dependant on the cumulative dose administered (57). Following the recovery of cardiac dysfunction via treatment with angiotensin-converting enzyme inhibitors (ACEIs) and beta-blockers, the reintroduction of Trz therapy has been shown to be generally well tolerated (58). However, outside of clinical trials that had stringent screening criteria and short follow-up times, the extent to which Trz-mediated cardiotoxicity is reversible remains undefined (59). Trials (33), such as the HERA trial, suggest that approximately 60% of breast cancer patients with Trz-related diminished LVEF have shown recovery to some extent at six-month follow-up. Real-world studies, on the other hand, indicate that 40% of breast cancer patients show no recovery despite both the withdrawal of Trz and treatment (35). The extent to which this is reversible outside of clinical trials remains ill-defined. One recent study (35), as mentioned above, demonstrated that 22% of adjuvant breast cancer patients recovered from cardiac dysfunction on withdrawal of Trz in a real-world population of 152 patients.
It is clear that a significant predictor of susceptibility to cardiac dysfunction and the potential of reversibility are derived from traditional cardiac risk factors including a family history of coronary artery disease, a history of cardiac disease, smoking and hypertension, and age (35,41). These risk factors predicate prognostic features of increased susceptibility to Trz cardiotoxicity, and are strongly suggested to be included in screening criteria before its use for strategic treatment management (33,35).I'm surprised that they say family hx of coronary artery disease (CAD) is an important factor to consider when assessing risk. MDA told me CAD didn't matter, only if CHF was in your family history. My mother, father, and sister all died from CAD (mother young at 67, sister real young at 46). Glad I'm getting those extra blood tests. Oh, and also, it confirms what you all revealed to me by your stories - it is not dependent on the cumulative amount of dose. It can happen at any time.
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I am very impressed with your knowledge dance tracer! Good for you. I have none of the risk factors: I'm under 50, have always had low blood pressure and no family history of heart issues, never smoked. I had neoadjuvant therapy. I started herceptin in may, had surgery (mastectomy and flap reconstruction) in August. I had an echo just before surgery and EF was at 65. Had another echo in November and EF was between 45 and 50. I had a treatment two days before surgery. I wonder if the stress if surgery and recovery had anything to do with my case. It was a long surgery and a lt of healing. I am going to mention this to the cardiologist next time I see her. I wonder if they've ever looked into anything like this. I know they told me it was safe to get the herceptin right before surgery.
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Oh, I SO hate it when I type up a long reply and then the computer eats it when I hit preview. I really need to remember to copy it before hitting that button!!!
I digress. So Kay, yes, I would wonder that, too. One study I am reading is talking about how part of the Herceptin damage happens via oxidative stress on the heart muscle cells. I would think any extra stress on the body, like surgery, could increase oxidative stress in the heart (just conjecture on my part).
The article talks about antioxidants possibly being heart-protective while on Herceptin. My question, of course, is would the antioxidants also be cancer-protective...aka, make taking the Herceptin useless? I welcome any insights/studies into this specific topic.
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The onc didn't want me to take any vitamins on chemo or radiation because they might lessen the effect of chemo. Specifically anti oxidents slow cancer growth and radiation and chemo target fast growing cells. I'm taking vitamins now (not mega doses though). I believe since herceptin doesn't target fast dividing cells it would be okay. Check with your onc though.
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I will Kay. Thanks - I know they don't want you to take antiox w/chemo/rads for the reason you said - that's for sure (mine is ok with regular multivitamin). I think it depends on the mechanism of how Herceptin kills cancer cells. If it is the same as the mechanism for how it kills heart cells, then I would think that antioxidants would not be a good idea.
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Dance,
There may be some validity to the stress factor...the last Herceptin I took...the one that about killed me...well, I fasted that day. At the time I was trying to fast one day a week...and it just happened to fall on the Herceptin day that week....My Onc basically said anyone that fasts during chemo is stupid. He didn't say "stupid" but I got the point...lol.
I was so convinced Herceptin was benign (in large part due to all the stuff I read!) I didn't take it seriously I guess.
That's how my life works....I don't take something serious and it turns and bites me.
The study you posted .. most of that info I had, except for being pre-disposed. I don't know if I believe that....since there is much research out there that says the opposite. Not to mention, I wasn't pre-disposed necessarily....my G-Ma had a heart attack at 42, but her arteries were clogged from high high cholesterol....so more diet related than anything else...
Anyway, my Onc says most women who get their EF back, do so within the first year. After that it becomes less and less likely as time passes.
I love all your passion and research! Thank you
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TonLee - glad to hear there is research that says the opposite about being predisposed. This likely is why MDA told me family history had no impact. Like so many things bc-related, looks like the jury is still out on that one, eh?
I was convinced it was benign and reversible (in the majority of cases) until that Cochrane study came out and made me take a 2nd hard look. Herceptin, honestly, seemed like a non-issue compared to the chemo drugs. So I can so see why it didn't concern you. Even all my docs say, not to worry, the risk is small, and usually reversible. That may be true, BUT, if one can do something to detect damage earlier and thus stop it earlier...why the heck not? Ounce of prevention.
I'm so glad you appreciate the research! It helps me learn to read it and then have to spit it back out to others. So, I likely will continue to share whatever I find that seems important/helpful.
I will say that if I was done with Herceptin and trying to get my heart function back, I would strongly look into antioxidants. Oxidative stress is one of the complicated pathways whereby heart damage occurs with Herceptin. Perhaps if taken soon enough after damage is seen (or maybe even later -never underestimate the body's healing potential) one can help increase the chances of reversibility? I will be trying to find more sources on this and will post any additional details I find that back this up or refute it.
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I wish this thread was in the Herceptin board or threads. Since I didn't do chemo, just Herceptin, I don't come here. Once perhaps due to hot topics I visited. I don't know if to say I am encouraged by this thread or alarmed. I'm encouraged because I know I'm not alone in my struggle wtih Herceptin, but alarmed because I now fear my heart problems may not be irreversible.
TonLee, Monday I am scheduled for my fourth Herceptin infusion. I am tempted to cancel the appointment. If you were me, would you? You may know from the Herceptin thread the side effects I'm struggling with. After my second infusion (due to complaints about chest pain, and a thumbing heart) my oncologist sent me to a cardio doctor. I had a echo done. Its base line was 50. My first echo before taking Herceptin was 65. It dropped 15% just after the second Herceptin infusion. So my oncologist has decided I'm having echo's every 6 weeks. I'm glad she is concerned.
I fear that my EF after the third infusion has dropped below 50. Plus my heart is jumping all over the place. It is weird to not just feel it move my chest. but see it. I also complain to my oncologist last time that I had pain under my left rib. It comes and goes. Tonlee, you mentioned the same pain. I'm scared.
My oncologist would like for me to have another Herceptin infusion and after the fourth another echo. If the echo is below 50 she is taking me off Herceptin for awhile. I am not sure I am comfortable doing anymore Herceptin.
As far as I know I am NED. But, since biopsy cutting half the tumor out until the mx was 3 months, I feared during the 3 month wait for surgery possibly seeding as to why I considered Herceptin. I know you don't see micromets in the early scans so I hope if there were any aggressive her2+ micro tumor cells Herceptin would lock into them and my immune system do it's job by destroying those cells.
My oncologist said that bc women who took chemo with herceptin were the ones more likely to have heart issues...not someone doing Herceptin alone. Surprise! I am one of the unfortunate ones who now has heart issues. I had a lot of energy before Herceptin and now I fatigue easily. My oncologist said the heart problems are reversable. From what I read here, I'm not sure. I wasn't that afraid of it before taking it because it was said to be the game changer and no side effect drug.
I am taking Qh10. I need to purchase Hawthrone as I heard that is good for the heart. Right now I am more fearful of losing my heart than a cancer recurrence. I hate to be so stubborn in all this but it seems with my history I have a right to be concern.
So...should I quit the Herceptin now while it is early or go for the 4th one and see how it goes? Would one more Herceptin treatment hurt me? I'mfortunate to have found out early that herceptin has compromised my heart. Hopefully it's early enough to reverse the damage it's done.
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Eve,
This is MY opinion, and as you know, I am not an Onc.
You didn't say if you are on an Ace Inhibitor and Beta Blocker? If you're not...WHY NOT? There is a trial right now that suggests they may be cardio PROTECTIVE....in my mind better to err on the side of caution....plus they may actually HELP reverse the damage already done.
I wouldn't do #4 without having ALL the information first. What information do you lack? You don't know right now, today, what your EF is. I would INSIST on the echo before #4 so you can make a decision with ALL the information. I would tell the Onc, "Look, I'm just not comfortable exposing my heart to Herceptin without knowing where my heart is today."
My reasoning is this: If your EF is the same, good, it hasn't dropped. Can you live with the possibility your heart may not recover from where it is TODAY? Can you be content living with it as it is now? (Quality issue) Because if you can't live with it, that answers the "Should I take more" question...no.
Second, you shouldn't "have" to make this decision without all the info. It seems unconscionable to me that you're asked to take a tx that may lower your EF, that if the past is any indication WILL affect it without knowing right now where your EF is.
When my heart showed no improvement after 3 months, even if my Onc would have said, lets conitnue...I would have said thanks, but no thanks. (But I was further along in tx than you...but I also have more involvement.)
I've taken CoQ10, Hawthorne, and L Carnitine, the best quality highest grade of these products...and NADDA. But from what I understand, damage at the cellular level isn't reversible so it's not because they don't work in some instance.
I would want the echo, and some drugs for my heart. I wouldn't do another Herceptin without them. But that is ME and my opinion.
I hope it helps you in some small way. This is such a hard choice....the blade (cancer, slow) or the gun (heart failure).
If I can do anything for you, please let me know.
Tonya
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Thank you sooo much Tonya. Reading your post brought tears to my eyes because I so needed to hear what you said. I've been so torn about all this. Plus reading your above post made me feel like I'm in trouble if I don't do something more now.
I'm not taking an Ace prohibitor. I'm calling my oncologist today. I hope she will see to it to do another echo before the fourth. I had a echo after the second infusion so she might thing I'm needlessly worrying...but my EF dropping 15 pts should give her reason to do this for me. I'm also going to ask about the Ace prohibitor and other trials to protect the heart.
I am taking the CoQ10. I need to purchase the Hawthorne. I just hope there isn't damage at the celliur level.
Thanks for your encouragement...
Evebarry
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tonlee - great response. I certainly don't have your experience level with all of this, but everything you said is what I was thinking.
evebarry - I read the professional prescribing info for Herceptin. Just thought I'd share what it says about drops in EF:
Withhold Herceptin for 4 weeks:
- if there is a > or = 16% absolute drop in LVEF from pretreatment levels
OR- if LVEF is below institutional limits of normal (would that be 50% at the low end? - they don't specify - keep that in mind) AND > or = 10% absolute decrease in LVEF from pretreatment levels
Herceptin may be resumed if:- within 4 to 8 weeks, LVEF returns to normal limits and absolute decrease from baseline is < = 15%
Permanently discontinue Herceptin if:- after > 8 weeks EF is still declined
OR- > 3 occasions of EF issues cause suspension of tx
So, according to this - apply to your situation. Your EF at baseline was 65. After 2 infusions it dropped to 50. That is a drop of 15 points. It is at the borderline low end of normal at 50 (according to my reading, normal EF is 50-65 or 55-70, depending on the source). You have not had an echo since your 3rd infusion and are considering a 4th, not knowing where you are at. You have not taken a 4 week break from Herceptin to reassess your LVEF, as per the guidelines above. If it were me I too would insist on another echo before proceeding. But at TonLee said, that is me and MY opinion. My tumor is much smaller than yours, so it would be an easier decision for me, as my cancer risk is most likely smaller. I hope this helps!!! -
I spoke with my oncologist nurse. I made it clear that I didn't want to do the next herceptin without an Ace inhibitor. What is sad, I don't even know what an ACE Inhibitor is or how it will help. I also said I was concern about even doing another Herceptin treatment without knowing if the 3rd Herceptin infusion worsen my EF level. I got a call back and they are calling my primary doctor to call in the ACE inhibitor.
My question now is what is an ACE inhibitor? Side effect? How does it protect my heart? With it is it safe to proceed with the 4th infusion. At this point I'm still schedule for my Herceptin infusion on Monday. I had hoped the oncologist would suggest I wait until after the next echo.
Dancetranc...good to know in regard if to continue or not. I'm at the very low in so it depends on where I am now. I guess I won't know until after the 4th infusion. They won't do a echo until after I do the 4th.
Thanks for your help.
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eve - An ace inhibitor is usually used to treat high blood pressure. Here is a link to WebMD for more info.
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Omaz, oh my goodness, I'm not sure if it's right for me. I already have low blood pressure..
High potassium levels. This is a potentially
life-threatening complication. Therefore, people on ACE inhibitors should
regularly have blood tests to measure potassium levels. Signs of too much
potassium in the body include confusion; irregular heartbeat; nervousness;
numbness or tingling in hands, feet or lips; shortness of breath or difficulty
breathing; weakness or heaviness in legs. Contact your doctor right away if you
have any of these symptoms. Also...Severe
vomiting or diarrhea. If you have severe vomiting or diarrhea you may become
dehydrated, which can lead to low blood pressure. Contact your doctor right
away.This is scary stuff. I already have an irregular heartbeat.
Another symptom is mouth sores. I have sores right now due to low immunity. I
don't know if I can handle more side effects. It all feels too much, and I'm
feeling a little overwhelmed.My luck hasn't been that good so far. No matter what I do
there seems to be no good choice. I'm tempted just to stop everything and see
if my heart on its own goes back to normal. -
Evebarry, I understand your concerns about the ace inhibitors and low blood pressure. It's especially tough for you b/c of your already low blood pressure. I wish I had an easy answer for you. So many times, all of our choices with bc suck. The hardest part is deciding what is the least risk. Risk of the cancer coming back, risk of heart damage from Herceptin, risk of side effects from ace inhibitors that would protect your heart from further Herceptin damage...you have to weigh them all and decide what is the least risk overall - never easy choices. I wish you well in your decision and understand your struggle.
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Eve,
I have low blood pressure as well. I was given a low dose....
Maybe you should ask to see a cardiologist. I didn't explain that because I assumed if you asked for an ACE your Onc would send you to one. I'm a little concerned that they just will prescribe it without meeting with you and doing some basic heart stress test type things.....
You don't HAVE to take the 4th Herceptin. Delaying it a week or two while you consult a cardiologist, and get an ECHO won't hurt your treatment. I know it is difficult to insist, especially when you have to do it through office staff over the phone.
I'm a firm believer in following your gut.
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Eve - That's a good idea from TonLee - see if you can get a referral to a cardiologist. That might ease your mind and get you a thorough evaluation.
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+1 TonLee. If it were me, I wouldn't give up on the Herceptin, but I wouldn't do your 4th one without another echo first. You need to know how much damage, if any, the 3rd one did. According to the Herceptin prescribing guidelines, due to the degree of your drop, you are right at the borderline and if it were me, I would insist my LVEF be re-assessed before having another infusion. Evebarry, it gets exhausting and overwhelming to be an advocate for yourself. No one else can do it for you, but we are here to help keep you strong.
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- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
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- 591 Pain
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- 109 Welcome to Breastcancer.org
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