Herceptin Heart Attack

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My EF started at 60-65%.

It dropped to 50-55 after the 12 weekly treatments of Herceptin with taxol.  did my first two treatments of once every 3 weeks and was rechecked.  My EF was down to 45-50%. They tried putting me on a betablocker but I could't function so was put on the ACE inhibitor lisinopril.  I continued with my every 3 week treatments. I was checked 3 months later and it was the same.  I made it all the way until I had 4 more every 3 week treatments before I ran into trouble. My echo on December 22 showed an EF of 40-45%. I didn't receive treatment, was referred to a cardiologist, and was put on a different beta blocker.  I haven't received any more Herceptin. It has been 9 weeks since my last treatment. I will have an echo at teh end of the month and then will see where I am at. The cardiologist seemed to think I was done with Herceptin and would need meds for at least one year or maybe longer before my heart would show any improvement.  I talked with my MO and told here I really wanted to finish the Herceptin, dont we all. I only have 3 or 4 treatments left. She pushed for an earlier echo. iF things have stayed the same, I am done with Hercptin. If they have improved, I will get another dose.  So now i am in the wait and see game. It helped to read all of your stories as they all seem very very similar.  

My question is........ what do we know about not taking herceptin with her 2???

BLERG.  Just got home from the doc.  I only had 3 Herceptin infusions (one every 3 weeks) and I'm down to 50 on my EF.  She is keeping me on and bringing me back in for another echo in 2 months.   I am trying to focus on the fact that I had a complete pathological response to the chemo before surgery, so the Herceptin is just extra insurance, right?!  ugh.  

Does anyone kno??   I was on TCH every 3 weeks with Herceptin EVERY Week from May 23 thru Sept 27th 2011.  Then onco reduced my Herceptin down to every 3 weeks.  I've had 23 tx's so far.  I read the link posted by TonLee...but can't determine if the 12 mos is based on weekly or every 3 week treatments.  Anybody have or heard of a 'number' associated w/the effectiveness?

Went to the cardio today.  My last Herceptin was the week of Thanksgiving.  I lasted 24 weeks until they took me off.  I have been on Ramipril and Coreg since before Christmas.  My cardio said that the key treatment for this situation is to increase the Coreg dosage every four weeks until a person is at the maximum dosage (25mg x 2 each day).  I started at 3.125mg x 2 per day.  According to him, this is shown to have the maximum benefit to treat cardiomyopathy.  He said we would meet every 4 weeks to double my dose until I reach my personal limit depending upon how it goes.  He said that some patients are able to receive some level of EVF back, some not.  I happen to have high BP, as some of you do not.  However, I am only 39 years old and never had high BP before TCH treatments.

Irregardless, no more Herceptin for me.  Just wanted to share what I learned today in case it helps anyone else.

So, when I heard that I may be taken off Herceptin, I was kinda bummed.  As the night is going on, I'm kind of freaking.    I'm trying not to.  I'm trying to remind myself that my tumor was gone before my surgery and then I did a BMX and more chemo, so I should be good even without the Herceptin, but I'm starting to feel my anxiety level rise.  Dammit.  I know I've been so fortunate, but I'm scaring myself tonight.  Don't you hate when you get home from an appt with the onc and then have a million questions you didn't ask?!  Arrrgh.

Thanks, Kay.  I'm sorry to be such a baby about this tonight.  I really needed to hear you say that.  I'm sorry about the partial response--yes, I am so thankful for great reactions to chemos, and like I said above, I know I've been really fortunate.  Thanks for letting me worry here, but you are too too right.  I do need my heart too.    I know if I'd have asked a few more questions, my doc would have made me feel better (she's great), but it didn't really sink in until later, she was 2.5 hours behind schedule, and I met nice people in the waiting room waiting to see the doc right after me!  LOL.  Also, today was a teacher workshop day so poor hubby had the boy all day and now is working tonight.  I'm going to go with that.  We'll do a couple more Herceptins, they'll check my heart again, and then we'll take it from there.  That's all I can do!    Thanks so much, Kay.

My onc told me exactly what TonLee wrote above.  She said that most of the research shows that in almost every cancer treatement, your maximum benefit is from the "frontload" of the medication.  So, we all received some benefit from this drug irregardless of how much our heart could tolerate.  I am grateful for all that I received.

 Its weird to me that throughout this process I became very emotionally attached to my docs, treatments and meds as that was my ticket to getting through this.  When the Herceptin was taken away, I was so distraught that I cried in the onc office as I was so worried about the "what ifs".  As time has passed, I see that as with all facets of this #@$% BC journey, we just have to deal with the hand we are dealt the best we can.

OH, BTW, you will all appreciate this.  In my cardio office, they have a big poster encouraging patients to be aware of PAD (peripheral artery disease).  On the poster, it urges, I kid you not, "it is important to be aware of the risk factors of PAD as it has the same mortality rate as breast cancer and colon cancer".  I told my cardio that I didn't appreciate that poster as I don't need a reminder of my situation.  He actually apologized and said that maybe they should take it down.  He hadn't looked at it that way before.  Huh!  Imagine that! 

I had neoadjuvant chemo (before surgery).  If I had a complete response, there would have been no cancer left in the pathology report when it came back from surgery.  There was still cancer, but it had shrunk a lot.  Hard to say how big it was before surgery, MRI said 4.5 cms, but BS and onc measured it on my breast and said 7 cms.  There was still 1.2 cms left after surgery.  Onc called it a "good" response.  BS called it an "excellent" response.  I would have liked a complete response, but it was a very large tumor.

I wonder that too TonLee. But the thing was that my cancer was very fast growing in the biopsy, grade 3 and the fastest growing. The pathology from surgery, everything was the same as the biopsy, except it was the slowest growing. I have read that if you have a large tumor, you likely will have different grades in it. Even though it was slow growing it was still grade 2 because all the other criteria was the highest. So it may be that part of it was just resistant to chemo. If that's the case hopefully the herceptin or tamoxifen will take care of it. As someone said on the thread, que sera sera. But I'm still doing what i can to make sure it doesn't come back. As are we all.

Yorelh how are you feeling about that???? i know you must be a little scared at this point...... how many tx's did you get in? Good luck in this journey

I just bought some CoQ10.  Does anyone know the dosage?  I'm still on Herc, next echo in 2 mos, EF at 50.  ugh.