Herceptin Heart Attack

Of course when I mention the study to my onco, he always reminds me that there's also a study compairing two years of treatment to one year!

Dear TonLee and everyone,

It is not ok that your oncoloigst did not acknowledge your concern and acknowledgement of heart damage.  Legs swelling can be a symptom of edema from conestive heart failure and I don't get it this lack of concern.  Have you considered getting a second opinion?  I saw my  onc  today who wrote down all the symptoms I am having (they are very mild- might just be anxiety)   and said she will be in close touch with cardiologist.

Yesterday I had about 5 hours of heart testing ie Myocardial perfusion scan, echo, MUGA etc. When they gave me the drug to "stress" my heart it was scary but I made it thru.  The radiologist was there the whole time and kept asking me how I was doing.  I felt some achiness in my heart and sudden tightness like my bra was too tight during the infusion but nothing happened.  I  still don't have a good idea of what is going on but bottom line my EF dropped  about 18%-20% from  baseline so the onc said she was holding the herceptin for at least a month and I may have to have an angiogram.  She said that cardiotoxicity from herceptin was very rare.  They are still trying to figure out if the drop in heart function is due to herceptin or underlying coronary heart disease.  I am guessing it is due to herceptin because a year ago my heart was fine.  She said I would have to have angiogram since they need to rule out coronary heart disease (narrowing of arteries) before they can blame the heart changes on herceptin.    I am wondering if any of you reading on this site have had this issue- ie cardiolgist recommends angiogram (cardiac catheterization)  That is a pretty invasive test- catheter going thru your femoral artery into heart.   .  My ECG has changed and now have left ventricular branch block (conductivity issue) - they don't know why. 

I wish that studies had been done already to know if just getting 6 months of Herceptin is as good as getting 12 months of Herceptin.  This whole issue is scary!!!  I think my body is telling me I have had enough Herceptin. 

Any thoughts, advice appreciated. 

Has anyone else gone thru this?   

How much Herceptin was each of us getting:  Mine is 513 mg every 3 weeks

Hi everyone,

 Well I 've now had echos and a stress echo, and a muga and myocardial perfusion test last week and saw my cardiologist and internist on Monday.  The test  results were confusing apparently and even contradicted each other the cardiologist said. He consulted with another cardiologist and 3 nuclear medicine radiologists.  Apparently depending on how they are reading the test, the results can differ from one radiologist to another .  He said that all this might be due to herceptin but also might be due to underlying coronary heart disease  (meaning I have some blockage in arteries).  So he wants to do an angiogram and put me on beta blockers, baby aspirin, gave me nitro glycerin (just in case) and told me not to exercise.  My internist also said he was uncertain but felt it better to wait and see if heart returns to normal since my onc has now stopped the herceptin.  So the issue is do I wait and see  for my heart to return to normal and risk possibly having heart attack  or do I do the angiogram  now and run the risk (albeit small) of having heart attack or stroke from the angiogram?  My cardiologist had no experience with herceptin induced cardiac problems.  I might try to find a cardiologist for a second opinion  who has had experience with this issue if there is one.  Meanwhile no herceptin and no breast reconstructive surgery. 

Opinions welcomed.  Scary decisions. 

hi, just saw your post in active topics...I found this link the other day while looking for info for evebarry..dont know if it will help, but maybe it will?..its discussing the risks to the heart with herceptin and chemo in relation to trials....sometimes, it seems its the chemo that can cause an issue..it seems to indicate that alot of the heart problems can resolve...wishing you all a good recovery!

http://www.adjuvantonline.com/breasthelp0306/Trastuzumab.html

Thanks Kay:  Please let us know all the details.

I've been having some heart issues since my last Herceptin last Tuesday so I went to my cardiologist today.  He says my last Echo looked fine but that they would draw some blood next week and do a Troponin level.  I forgot I had this done one other time and he says he thinks it's a better indicator of heart damage than an echo because if your heart is damaged it secretes enzymes that indicate that and echos are much more subjective.  I'd be curious what any other doctors say about Troponin levels.

gee whiz y'all... you're situations make me grateful they've suspended my herceptin treatments, before things worsened. i've felt rather discouraged by the decision (meanwhile observing my cancer antigen fluxuations, hemogloben, and muga test results, combined) but my case isn't thus far as extreme as some of the descriptions i'm reading here. a reminder to count one's blessings, from whence-ever they come...the whole heart-attack potential scares the daylights outta me. i've had episodes of symptoms that caused me to wonder if i'd wake in the morning, and as a parent, i find this to be a terrible thought. i am regretting their decision to administer AC treatment prior to herceptin, and hoping i won't need too long a break from it before seeing some improvement to my muga scans...

 i am so very sorry to hear of your trials, am grateful you've shared them here, and I am wishing you each a very rapid recovery!

 question: what does "tx" stand for?

That is interesting. The cardiologist told me she could try either beta blockers or ace inhibitors to help my heart work. I think she may have said lighten the load on my heart. She decided to start with a beta blocker, but said if I had any issues on it, she would switch me to an ace inhibitor. I am going to mention that to my onc and cardiologist too. If you don't mind me asking, what cancer center do you go to?



So far, I don't have any problems with my thyroid, but they do run in my family. They checked the thyroid with a blood test not long after I got diagnosed, but I am going to ask them to check it again. I've had chemo and rads since then.

here is a link to a site DH found 

 http://www.cbc.ca/news/health/story/2011/03/21/f-herceptin-breast-cancer.html

Hi everyone

 Interesting to see that some of us have similar issues.  I just got my Vit D level retested and it still came back low even though I took a high dose Vit D prescription for a month. I just heard a lecture at a breast cancer conference in which the MD said the idea with Vit D is to take enough Vit D to get it up to a normal level and then lower dose to maintain the level.   I wonder if deficiency in Vit D can impact heart.  I know they are certainly exploring relationship between Vit D and breast cancer.  My thyroid levels are also running a little high now ( I am on supplemental thyroid since having a thyroidectomy in Feb)  but not abnormally high.  I am going to encourage my endocrinologist to talk with my oncologist.  Thyroid issues can impact the heart.  The docs from the various disciplines really do need to talk with each other. 

For now my herceptin will be  held, probably for 2-3 cycles, the onc says.  I am still debating whether I should go ahead with the angiogram that cardiologist recommends.  I have taken 3 days of beta blockers and feel a little tired but maybe it is cause I have been not getting enough sleep.   Here is the big question:  If they hold the herceptin and your heart tests go back to normal does that prove conclusively that it was the herceptin that caused the changes or could one still have some degree of coronary heart disease even after the herceptin is stopped.    If they restart the herceptin will the heart again get worse?  I hope I can find a cardiologist who has some experience with cardiotoxcity from chemo and herceptin.   Good luck everyone with the tests.  The myocardial perfusion scan and MUGA's are no big deal.  The angiogram (cardiac cath) is much more invasive, so that is why I am on the fence about having it done.