Herceptin Heart Attack

ArleneA

Wow Kay, you are almost finished.  How exciting.  I need to ask my cardiologist about those tests...no one has ever mentioned them and I always forget when go for checkups.  What is enalapril.

Leftfoot:  We all react so differently to the medicines.  I liked the metropolol better than the coreg because the coreg does make me tired too but I just push through it the best I can.

 TonLee:  Good luck in San Antonio.  Pretty city town though.

Kay_G

I am on coreg and. Tolerate it well. Enalapril is an ace inhibitor, so I. Am also on. Both a beta blocker and an ace inhibitor. Nine more weeks to go!

serenitywisdom

Hi everyone,

Good to be able to read all your posts and catch up and THANK YOU FOR ALL THE WELL WISHES.  I had a 3 hour surgery on Monday, they removed the port  ( no scar) , switched out the tissue expander which I have had in for 15 months  for a silicon implant and reduced and lifted the other breast so now the boobies match.  Great not to have to put pads in on top of the TExpander and wear scarves to cover up the very different breasts.  I stayed in 23 hours so left hospital Tuesday evening.  I highly suggest if you are getting a TExpander out and more done,  than try to at least stay overnight.   With my potential  heart issues, I now ask for  future surgeries done in a real hospital, not a surgi center that may not have needed staff if something goes wrong with heart.   Most insurance companies don't hassle you and don't need an authorization if the stay is less than 24. hours.  Results look pretty good.  I am wearning a very tight  sports bra 24 hours / day until I see the plastic surgeon which is about 10 days post op.  I am literally glued together so I think that is good cause less scarring by not having stitches. Just doing a lot of resting and sometimes need to take vicodin but not a big deal.  My plastic surgeon does not want me to drive for a week though. I look like a teenager, can't believe it and went from wearing an extra large to medium blouse.  

I saw the cardiologist yesterday and got good but rather vague news.  He says that I should stay on ace inhibitor ( metropolol) and beta blocker  (enalapril) for at least 3 more months.  He wants me to get a stress echo in 3 months for further evaluation and then maybe I can stop taking them.  However he says ace inhibitors are generally very good-cardioprotective.   He said that all the MUGA's I had,   he thought were just "noise" meaning the way the test was interpreted.  He said MUGA's are read by computer but there can still be error and he doesn't think I have heart disease.  This was a switch because previously he was recommending I have an angiogram and said I might have had a heart attack.   I asked him why my MUGA dropped 19% while I was on herceptin and then went back up a little when I got off herceptin  and then dropped again 5 points when I was rechallenged and had 2 more infusions of Herceptin. I feel like I am pretty done with herceptin since I took it for 10 months and plan to discuss this with onc.  She was on the fence about need to take more.  In fact she cancelled the most recent herceptin infusion  last week cause it was just before my surgery.   Cardiologist said He did not think that my results are  significant cause EF was still above 60  

I think I will try and listen to my body.  If I am getting more fatigue and short of breath on herceptin that tells me something.  . 

 This week I called Genetech to discuss herceptin studies and if there is any new data on duration of treatment with herceptin and long term results. .    The pharmacist I spoke with mentioned the Finn study but apparently they still don't have  more data on knowing what the real length of treatment should be with Herceptin.  I guess we will just wait and see.   

Good luck everyone and I send positive healing thoughts to all of you out there!

Kay_G

Thanks for the update!  Glad you are doing well. Continued well wishes to you.

TonLee

Awesome update Serenity!  Hope you heal fast and well:)  Congrats on the DEPORTATION!

Hindsfeet

TonLee ... When did you begin noticing heart issues? Before the herceptin infusion, my EF was 65. After the second one it was 50-55. Almost 15 points after second infusion. Is this normal. I had my third one last week. My oncologist sent me to a cardio. I have developed a erratic heart beat as well. I went ahead with the third infusion and I'm scheduled for the next two. But after the next one I will do a echo. I will be doing echo after every two infusions. If my EF goes below 50 my oncologist is taking me off herceptin for a few months and then recheck it again. Do you have erratic heart problems?

I'm 50/50 in continuing herceptin treatment. I would like to do about 6 months to cover possible micro stray cells. Not sure I can.

TonLee

Eva,

They did a base line MUGA for me before chemo started....my EF was 69.  Three months into chemo I went back for another MUGA.  Except they changed machines, upgraded, and it said my EF was (going from memory here) but something like 63.  So they said, ok Tonya, this is your new baseline.

At that point I attributed my rapid heart rate and short breath to Taxoterrible, and they weren't too bad.  

Three months later (6 months on Herceptin weekly) they started using new software with the MUGA and it showed my EF below 60 so they said, ok Tonya, this is your new baseline.

Ok, I received Herceptin EVERY week during chemo.  Once Chemo was over, I received Herceptin every 3 weeks in a stronger dose.  And while my ejection fraction was dropping the whole time I was on Herceptin, it REALLY dropped when I started taking it by itself in stronger doses. 

The first only Herceptin (they infused me in less than 30 minutes each time) I didn't feel well...my heart felt odd, but I "pushed" through.  After the second and third Herceptin only, my heart rate spiked to over 160 for four hours (usually it is around 55-59 bpm).  I had constant left side pain...for the entire three months but my Onc poo-pooed it.

When it was time for my next MUGA, I was due for a Herceptin right after.  The radiologist called my Onc immediately and said...HOLY CRAP!  It's below 50 (48)...and I just re-did her previous MUGA's on the new software....the original 69 EF was correct and it's dropped over 20 points...

So my Onc stopped Herceptin.  Said the window of opportunity to restart it is 3 months.  If the heart doesn't bounce back, then I'm off for good.

It didn't bounce back.  I stopped in September and my heart shows "no improvement." 

Yes I can feel my heart jumping around, struggling, sometimes it feels like I have a jumping bean in there instead of a muscle....

I had an xray that showed my heart was swollen a little bit...and I went to a cardiologist, who prescribed 5mg of Liprisnil and I wasn't able to take it.  It dropped my blood pressure too low, and imo almost took me out while I was sleeping....I woke up gasping for air. 

I am back on it now, 6 months later because my blood pressure (usually 90/70) is higher because I am hypothyroid, and since my Ooph my thyroid medication has to be adjusted, but we're waiting two months to see what my hormones do...so right now, because of the thyroid meds I can tolerate the ace inhibitor, at half dose.

The other category is beta blockers but they are worse than ace inhibitors because they slow metabolism (weight gain), lower blood pressure, and keep your heart rate from getting up (which defeats the whole purpose of cardio).  Both my cardiologist and Onc said they won't prescribe them because I will hate them (I'm very active).

So the cardiologist said GOODBYE..there is nothing he can do for me.

And that is that.

I stopped 3 txs short of a year.

Herceptin may be a miracle drug, but it did a real number on my heart.  And depending on how my heart responds, may end up being what kills me.

You have every right to be concerned.

ArleneA

So, I saw the cardiologist today who said all is fine.  My EF is fine (yeah right) and I asked about the troptonin (sp) test and he almost laughed in my face saying this test is only done when someone is in the ER with a heart attack to see if there is any damage.  So we talked about biking and running and that is about it and he sent me on my way and said see me prn (as needed).

TonLee

Yup....sounds about like what I experienced Arlene.

I just don't buy the...there is nothing they can do for us line...that seems bogus to me.

ArleneA

I'm on a search for someone more knowledgeable.  He kept misprouncing Herceptin leading me to believe he doesn't have a clue about Herceptin and its impact on the heart.  WHY don't these cancer centers have cardiologist on staff who are knowledgeable?

TonLee

I don't know...probably because cancer of the heart is rare?  My Oncologist is playing my Cardiologist now...he said few Cardiologists know Herceptin the way an Oncologist does....I dunno.....right now it is what it is....and he did exactly what the Cardiologist did....so frustrating.

ArleneA

Well TonLee:  They should know since Herceptin affects a lot more hearts than is acknowledged.  I agree, it is what it is.  I'll ask my onco in a few weeks.

Vent, vent, vent!

kdking

Well I got my MUGA results. EF has dropped from 51 a month ago to 37! I have been off Herceptin for a month and it has decreased. 35 is considered heart failure if I'm reading correct. My onc is not having me see a cardiologist but is conferring with one. So I will have another MUGA may 15th. He said if there is any improvement at all we will start Herceptin. I have not had nearly enough treatments for it to be anywhere near effective. If there is no improvement, we will look into clinical trials. I'm so frustrated!

TonLee

KD,

I'm so sorry to read this.  I know at 35% Medicare will pay for a pacemaker, so yeah, that's pretty bad.

I think you might have some luck with the trials, my Onc said there are some promising drugs without the cardio toxicity in the "pipeline"...

Keep us posted.  Hang in there!

dancetrancer

KD, I am very sorry to hear that.  They are running a vaccine trial currently for HER2+ patients.  I don't know if you'd qualify b/c of not being able to finish Herceptin and/or your cardiac status - but it may be worth looking into.  Looks like the closest location to you would be Washington, D.C.  Driveable, but you'd have lodging, etc. expenses during the course of the trial.

http://clinicaltrials.gov/ct2/show/NCT00524277 

Kay_G

KD very sorry to hear that. I hope it goes up for you quickly. Please do keep us posted.



I found something very strange today. I was at the gym on the elyptical and it said my heart rate was like 110. I took my left hand off to wipe my head and it said 50. It seemed to consistently register this difference between my left and right hands. I wonder if the machine was broken, or maybe it is because of the lymphedema? Kind of freaked me out. I will have to use a different machine tomorrow and see if the same thing happens or not.

dancetrancer

Oh boy, well this is timely.  I normally don't post on this thread, just lurk b/c I just started Herceptin and want to be aware of what to watch for, etc., etc.  This article just came into my inbox.  This is the first time I've seen such a strong warning about Herceptin...most of the time they say the heart risk is low and reversible.  I am one of the "low risk" HER2+ gals, b/c my tumor is so tiny and treatment of it is controversial.  It took a LOT to convince myself to do treatment.  I am having some STRONG reservations about continuing after reading this.  I hope I'm not scaring anyone (I tend to overreact when I first read something).   I'm going to post this on the triple + thread, too. 

Trastuzumab Raises Cardiotoxicity Fivefold in Breast Cancer Patients 

The review concluded that high-risk women with few cardiac risk factors would benefit from trastuzumab, while those at lower risk "must be carefully evaluated," adding, "The oncologist should share the decision with the patient concerning whether and how to start the treatment."

Dr. Lenihan said he was concerned that the potential cardiotoxicity might cause oncologists to steer away from trastuzumab. He is a proponent of a multidisciplinary team that involves a cardiologist at the outset of therapy.

If cardiac effects develop, "the key is not to ignore it, but to pay attention," said Dr. Lenihan, who is also president of the International CardiOncology Society USA/Canada.

Early identification enables rapid treatment, which can stabilize or correct the heart issues, he said. That allows patients to return to their cancer therapy.

Dr. Lenihan and his colleagues at Vanderbilt University are currently conducting a study testing various cardiac biomarkers to detect toxicity during chemotherapy.

It is still unknown, however, whether the cardiotoxicity that develops during therapy is ultimately reversible, or becomes a lifelong issue. While the ejection fraction may recover after withdrawal of trastuzumab, at least one study - the Herceptin Adjuvant (HERA) trial - has shown that some women had long-term loss of heart muscle cells, said Dr. Telli.

"So we know that the heart is taking a hit," she said, adding that the trastuzumab damage is not "some sort of reversible thing."

The key, she said, is for oncologists to weigh the risks and benefits individually in each patient.

TonLee

Dance,

That's pretty much what I was told from the get go...and then once my heart was damaged I was even given statistics about women who get their EF back...most get it back within 6-12 months of stopping Herceptin..the longer the heart goes without improvement, the more likely there was damage at the celluar level and it won't come  back....BOO!

dancetrancer

Ton Lee and others on this thread, based upon what happened to you (which I am so sorry about), do you feel echo's/MUGA's should be done more frequently than every 3 months, so that that any damage can be caught even earlier?  It's certainly something I'm going to ask my onc about.

Can I ask those of you on this thread, how many Herceptin treatments did you have before you sustained a measureable drop in EF?   Aka is this a cummulative thing, or can it happen at any point along the treatment path?  I know there may be no answers to that, but I'd like to at least hear your thoughts.   

The other question I have is how specific was your echo, if you had one?  My baseline echo said my EF was 65 to 70%.  I see many people listing specific numbers, not a range.  Is this unusual or typical to report it as a range?  Just makes me wonder if this would allow the numbers to drop more than they should before it is picked up.   

kdking

Thanks everyone for the info and the well wishes. I looked at the clinical trial info you mentioned Dance...although DC would be the closest location..I wouldn't mind going to Hawaii...lol

dancetrancer

Oh kdking, wouldn't that just be grand????  I LOVE Hawaii!  We went there for our 10th anniversary.  

TonLee

DT,

I think a MUGA every 3 months is plenty.  My Onc said MUGAs are better than Echos for more precise measuring of ejection fraction.  Though once my EF dropped below 50% the cardiologist sent me for an echo and it was exactly the same.

I think giving you a range is pretty normal ...I've talked with my cousin (diagnosed 1 yr after me, triple positive) and they gave her a range as well.  Also, she had a 5 point drop immediately, after the first two, and a steady 5 point more drop over hard chemo.  She just started her Herceptin only a month or so ago, and they give it to her much slower than they did mine...she's due for another scan soon...so we'll see how she's doing.

In my case, my EF was dropping the entire time but really spiraled downward when I started taking Herceptin by itself, in stronger doses every 3 weeks.  They would have caught it earlier, and stopped it earlier, but they kept changing machines or software and saying...this is your new baseline.  So it was a fluke.  I haven't heard of a single other person this has happened too.

So it can be both cumulative and instant...depends on the woman.  You still have a very good chance of not having ANY heart issues....most women who take it don't.

I think I got 4-6 Herceptin alone txs and then I couldn't do anymore.  So I missed the last 3.

If given the option, I woulda stopped at 6 months.  Those last 3 months really did my heart in....

You could do one and see how it feels.  I believe from other's accounts, if the damage is going to occur, it starts right away for most people.  So in 3 months you would have what?  4 treatments?  Then a MUGA.  If your scan shows a compromised EF, you can always stop.

It's a tuff call...

dancetrancer

Thanks so much Ton Lee for the input!!!  I really appreciate it.   My protocol during chemo is to get the larger dose of Herceptin every 3 weeks with the chemo, not weekly.   However, I have the option of doing it weekly, at a smaller dose.  Have you seen any research or articles that suggest that giving it at a lower dose is more heart protective?  It's certainly something I would consider.  

I've already had my first TCH.  What do you mean "see how it feels"?  It's hard to know right now (10 days post chemo) about my energy level, b/c my hemoglobin is low, so of course I fatigue easier with activity.  

Omaz

dance - In terms of efficacy I have read that every 3 weeks is the same as every week.  I haven't read anything about 3 vs 1 in relation to heart issues.

dancetrancer

Omaz I had heard that about efficacy as well.  I will be researching over the weekend and will post anything I find of interest (in my usually obsessive-compulsive fashion).  

kdking

I received weekly doses of Taxol and Herceptin. ( after four rounds of AC) I was supposed to get 12 weekly doses of Taxol and Herceptin, but had to stop after the tenth one when I was rushed to the ER and my heart rate was 220. I noticed my heart rate jumping around after about the sixth tx. The plan was to continue then every three weeks until November. That being said...I don't think there's much difference in your chances of something happening if you get the smaller doses or the big one. Like Ton said there are many who take Herceptin and have no problems at all. If its going to happen to you..then that's the way it will be. It just stinks!

dancetrancer

That sucks kdking.  Thank you for sharing! 

Kay_G

After my ninth tx my EF was 45 to 50. It had been at 65 after the fourth. I think it had just happened. Started on a beta blocker and retested in three weeks with no change, then added an ace inhibitor and restarted the herceptin. Just had another echo and it is still at 45 and just ad fifteenth tx, three more to go. I do think the meds are protecting me from getting worse, but I guess they don't help everyone.

dancetrancer

Interesting kay, thank you.   I don't know, but it just seems to me that 3 months is waiting too long to do the echo.  So much could be happening with each treatment.  Makes me wonder if the 3 month guideline is based upon some science behind how fast damage happens, or if it is based upon controlling costs.  

I think I remember someone saying something about a trial or something where you take a drug during Herceptin to help prevent heart damage.  Anyone familiar with that/have a link? 

Kay_G

One of the nurses in the chemo suite told me that they re doing a trial at my center where they are using the two blood tests, troponin and proBNP nstead of echos every three months to monitor the heart. Since I've had the problem, I have been getting them before each herceptin infusion. The proBNP seems to be much more sensitive. Normal is below 125. When I first got it tested after the first bad echo, it was 40. After the next herceptin it was 80. Then it was 120, then 130 and she increased the ace inhibitor. Now the last time it was 120 again. If I can find some info about the study, I will post it.