Herceptin Heart Attack

This site has been such an incredible source of information  for me since my diagnosis last March  - no matter what questions or issues I've had at any given point in my treatment, I've always found others talking about exactly the same thing.   A huge thank you to all of you who have taken the time to share your experiences - it's been a huge help, as well as a source of comfort. 

I'm having the same symptoms everyone else has described here, although my doctor has opted to monitor the situation with echocardiograms rather than the Muga scan.  I'm scheduled for Herceptin #13 this week - hoping to be able to finish all 17 of them.   One thing I did want to share - my insurance company (Blue Cross Blue Shield of NJ) has denied paying for the 24-hour Holtor monitor test - said it wasn't covered by our plan.  Feeling fortunate that in 9 mos. of treatment (and hundreds of thousands of dollars I think) this is the first thing they've rejected but I'm going to challenge it anyways - my doctor said it's a standard test to run given my symptoms and PVC's which showed up in one of my echos last August.  If you're scheduled for one, might be a good idea to check with your insurance company beforehand - mine didn't blink at the $10,000 neulasta shot (x 6!), genetic testing, or any of the other tests/treatments I've received but bounced back a standard $750 heart test.

I'm also on Coreg.  They only had me miss one herceptin and I went right back on the next one, so six weeks in between infusions.  I'll see on Thursday if there has been any further deterioration.  I think someone else here waited two months before trying again.  I get echos instead of mugas too.  The cancer center I go to only does echos for following chemo patients.  They used to do mugas, not sure why they switched.  You might want to check with your onc about getting your port flushed.  I am not sure, someone mentioned it shouldn't go a month without being accessed.  I went six weeks with no problems.

Had my echo today. EF 60-65%. Better than the last one. Getting a halter monitor tomorrow. See the cardiologist next week. Is anyone seeing a cardiologist that specializes in cancer patients???

Great news Southampton mom! I am seeing a cardiologist who specializes in the cardio toxicity of chemo at UPenn. I think there are two of them there that specialize in that. I am getting the same exact treatment as Arlene and others here, nothing new or different though. So if your EF is okay, why do you need the monitor? I am so confused to what I am feeling. I thought it was palpitations, but my DH said my pulse was slow and steady. Would it be anxiety? I will ask the NP what she thinks when I go for herceptin on Thursday.



TonLee, I picked up some frozen chicken tenders yesterday, so I am set to try out the recipe you posted. Should I let them thaw before starting? I was thinking I should, but the bag says to cook frozen.

I met with my Onc today, and she said my Herceptin break is now permanent.  She discussed my case with my cardiologist and with a 45 EVF, it does not make sense to take Herceptin as a preventative and damage it further.  She did say that there have been studies on Herceptin treatments for 9 weeks, 1 year and 2 years.  The study showed that they had equivalent outcomes.  My Onc said that the "frontload" of the medication is the most important, and I did achieve that.  So, those are the threads that I am hanging onto.  She said my cardiologist will also likely start me on a 3rd medication when I see him in 1 1/2 weeks.  I am currently on Ramipril and Coreg plus the Tamoxifen.  

 Opinions - now, what do I do with my port?  She said she would write the order to have it removed if I wished.  I would love to be rid of it, but I am apprehensive because of the "what-if".  What do you all think???? 

Il.  I don't know if I'm going back on Herceptin but since I made it through #10, I feel I can't ask for much more than that!!  I'm meeting with the surgeon tomorrow and I just might have mine out but probably not until after my Echo in two months if I can wait that long.  I have good veins for the Herceptin so I might go ahead and get it out.  I really don't like it...it is creepy and hurts.

ArleneA:  Maybe that doctor meant 25% of women because that's how many have a HER2+ diagnosis compared to all breast cancers?  I don't know, just a thought.

That is right, ladies.  I've actually heard that only 20% of bc folks have an overexpression of the Her2 protein, and we are the only folks that will benefit from Herceptin.  We used to be the 20% who would kick the bucket most quickly!  That's not the case anymore, at all, and that's pretty much only because of the Her2 targeting meds.  

Herceptin has a very high success rate - although we're pretty much all here because it's hurt our heart, there's some evidence that only 3 doses of it makes a real difference in cancer.   Truth is it's too new, the optimal dose isn't known yet.  

Has anyone else's EF dropped but you *didn't* get any kind of meds for it?  Mine dropped to 47% in Dec....there was a very slow decline since I started...every 3 month scan would show the loss of a point or two until this 10 point or so drop.  I am wondering if I should have had some meds!  The lack of meds might be because they think I have "sad heart" (after the death of 2 beloved people including my mom, and 2 beloved pets between Sept and Nov).  Has anyone else been told such a thing?

I am in the cancer center right now waiting for my labs to come back before I go back for herceptin. The NP told me they were having problems last week getting the protonin and probNP results back quickly. I said so you have other patients who have to get those checked before you can do the herceptin, and she said we have a lot. Hmmmmm...... I was surprised.



Pamonymous, I have not heard that, but it does make sense to me. My EF stayed at 65 until after dose 9 when it dropped to 45, so I had a 20 point drop all at once. I am not sure if it would have made a difference if it was a slow, gradual drop rather than all at once. I am on coreg and enalapril, a beta blocker and an ace inhibitor. My blood pressure is low, sometimes it even goes into the 80's or they would try to increase the dose or add a third med. I feel good now though, better than I have. The NP says that it's possible that I was feeling fatigued from the heart function and didn't realize it and now I am feeling better because the meds are helping. I hope she's right, not getting another echo until March so I won't know until then.

Thanks very much for the info, ladies.  My next MUGA is Feb 1st, and if the EF hasn't recovered I would like to be able to ask about specific meds.  My BP has been all over the place and usually needs to be checked twice.  

The docs said I should be asymptomatic at 47%, but that's not the case....can't exercise as much, get short of breath much more easily, and feel tightness in chest when I get upset.  I suppose it could all be anxiety though.

- Pam 

they're something in your blood that shows how well your heart is functioning.  I guess they can't do echoes every three weeks so this is a good, quick, cheap indicator.  It must have been okay because I got my herceptin today.  11 down!

hmmmm.....that is strange Arlene.  Are you having another MUGA or echo before that?  I do feel somewhat comfortable taking the herceptin since they're watching so closely.  Still a bit nervous of doing more damage to the heart muscle, but cardiologist says it would be very rare to have more damage.  It is the cardiologist who ordered the blood tests, but the chemo nurses draw the blood, and then the onc NP gets the results before she signs the herceptin order.

I told the NP that I have felt better lately, and she said it is probably because the meds are helping my heart and that is making me feel better.  Maybe that is why you feel better.

I never got any Herceptin because my EF went down to 37 from my baseline pre-chemo of 63. That was just from the Adriamycin! I am tired all the time, get breathless easily. This has been by far the worst effect from chemo.

I am sorry to hear that khertenst!  Did that just happen?  What are they doing to try to improve it for you?  My NP told me yesterday the meds the cardiologists give you definitely help to improve the heart function.  I know it doesn't work 100% of the time because my cardiologist told me it doesn't, but still there is a good chance they can find something that will help you out.  On the plus side you are stage 1 and grade 3 and the adriamycin should have worked very well on that.  Fast growing tumors respond the best to chemo. Stay in touch and let us know how you're doing.