Herceptin Heart Attack

ArleneA

Alice & Barbie:  I also have mitral valve prolapse (MVP) which I've had for years and was told that Herceptin was not an issue with MVP.  I apparently had it for years before I ever had any symptoms and rarely know it is there.  They only hear it occasionally but always shows up in the Echo.

bcbarbie10

Wow, Arlene!!! You're an idol! Im just, just thinking/contemplating a 10km, and here you are, done with 21k!!!! Woohooo!!!! My last EF is 62. What's yours when you did the half marathon? Im sooo inspired. Did a 6k in around the neighborhood yesterday, and felt empowered! Congratulations!!!👏👍👏👍👏👍

TonLee

Arlene!

That's great news!  Congrats on the half marathon!!!

I used to be a big time runner, but my knees...they are SO BAD now. 

While on vacation though I looked into "Chi Running" ... I don't usually buy into that kind of thing, but you know I'm gonna try it!  I think because I spent time in the military, that I have always been a hard heel striker (used to get a "boot beat" while in uniform.  Perhaps most of my knee problem stems from the way I run?  I dunno, but am going to try this Chi running thing this week, on a treadmill, so I can really focus on my form.

It's essentially mid-foot striking.

ArleneA

Thanks Ladies.  Barbie:  My EF is at 65 now...started at 73.6

Chi running...must research that!

bcbarbie10

Ok. But in doing cardio, could we push it to the limit or just stay up to, say 75% of our max heart rate? Im still on herceptin, btw. But i so want to get my old fitness level back! I try to stay within that self-imposed limit, tho i can still push farther. What do you ladies think/do?

TonLee

BCBarb

I pushed hard the entire time through chemo, Herceptin, and now..... as hard as I can go.

My cardiologist said it was fine.

bcbarbie10

TonLee, that's what the MD's told me, too. So maybe now, i wouldnt be so OC about checking on my HR monitor. I might scare the peeps at the gym, still being semi-bald and all.

TonLee

lol BcBarb,

My heart rate shoots up a lot faster/easier now because of the EF thing.  This is part of the reason I don't feel as fit....even though my resting heart rate is between 47-51 now....when I work out moderately it shoots to 150-160 and when I put a little more effort into it...180-190.

Cardiologist said that is because it is carrying the workout "load" while trying to meet the oxygen/blood demand of the muscles.

I wear a bluetooth bodymedia arm band simply because with heart damage there is no accurate way to guage calorie burn with a caluculator.  We are not burning calories as efficiently, and I needed to know (not so much during working out) how many calories I burn while living the rest of my life.....

It even tells me how many I burn while sleeping!  (About 550).

Very useful.

bcbarbie10

Thanks, tonlee, ill look for the bodymedia armband. Does it need a cheststrap? I want to stop wearing that thing, too.

TonLee

BCBarb,

The bodymedia arm band (I have the bluetooth) is just a "calorie" burn reader of sorts.  You wear it 24/7 on your arm (except in shower, pool, etc) and it uses a bunch of algorithms to tell you how many calories you burn while sleeping, walking, eating, LIVING!  lol

It plugs into your computer and downloads a bunch of data.  It shows every time you wake up at night out of REM sleep!  Then tells you your sleep efficiency, how many hours and minutes you were actually asleep, (LOVE THAT!).

It also has a software program on line---free 1st 3 months, $6.95 a month after.  It downloads your data, then you enter your meals, and it will tell you your calorie deficit or overage, tracks your weight, nutrition, etc.

Here is a blog I wrote about it.

http://lifehappens.joeuser.com/article/428126/Hey_Fatty

Check it out!

Omaz

Hi Tonlee - I was thinking about getting one of those for myself for Christmas.  Which one do you recommend? I am especially interested in the sleep part.  Thanks

TonLee

I like the bodymedia one because the software seems better to me than the body bug.

I have the bluetooth one so I can look at the data on my smartphone...like when I'm working out....or just want to know how many steps I have to hit goal that day.

My blog discusses the limitations.

Hope that helps

Shorsley

Hi, I'm new to this forum being diagnosed just 6 wks ago. I am getting Herceptin, taxotere and carboplatin every 3 weeks. I have been having palpitations and frequent PVCs which sent me to ER on Thanksgiving. Bloodwork ok and pre-chemotherapy echo were normal. Saw cardiologist who didn't think chemotherapy to blame but MO does feel it could be chemotherapy related. Cardiology started on atenolol heart med to help which stopped the symptoms until my second chemotherapy 3days ago and since palpitations and fast heart rate are back though not as bad as before heart meds. Anyone else had similar problems? I really feel Herceptin could be a miracle drug for my cancer just wondering if the palpitations are harmful or if they will subside with further treatments. Also getting dexamethsone iv and by mouth after treatments I guess could cause some palpitations.

TonLee

Shorsley,

Before starting Herceptin you should have had a base line Echo/Muga.  They are supposed to repeat the test every 3 months while you are on Herceptin to see if there is any problem.

I am not a doctor, lol, but my experience and reading that of others, makes me believe women who start feeling heart issues (palpitations, skips, etc) seem to feel the damage before it shows up on Echo/MUGA.

There is an ongoing trial right now that gives women starting Herceptin an Ace Inhibitor.  They hope to see if it will be cardioprotective.  So the fact you are on a heart med may be a GOOD thing.

Having gone through this my advice is this.  Listen to your body.  I know that sounds stupid, but if you "feel" something is off with your heart, keep pushing.  Tell your Onc, over and over.  Keep detailed records.  When it starts, how long it lasts, what you're doing at the time, etc.

And make sure, no matter what, you continue getting the MUGA/ECHO every 3 months.  I've read so many women's MOs stop the tests because everything is fine the first 6 months on Herceptin.

Don't buy into that.  The latest research shows that women are having cardiac issues from Herceptin FIVE years out...so you should be monitored every 3 months while on it, and once a year for at LEAST 2 years once your off.  ESPECIALLY if you have any issues while on it.  This is recommended by the maker of Herceptin.

Good luck and please keep us posted on how the heart meds work for you!

ArleneA

Hi Shorsley:  I'm so with you!  After Chemo 1 (THC) I too, ended out in the ER with major PVCs.  They said chemo zapped my minerals...loaded me with minerals (potassium, etc.)  PVCs gone and home I went.  By morning, they were back and back to the ER....this time they ran major tests and got them stablized but didn't take long for the PVCs to return.  They put me on mega doses of Beta Blockers which settled it all down.  These cardiologists (note that VERY FEW cardios are familiar with Herceptin and its reaction on the heart, they should be but they aren't) said it wasn't chemo related.  RIGHT!  So back to Herceptin I went after skipping it for chemo #2 and #3 and I only had 4 chemos. My EF (with MUGA) began at 73.6 and dropped to 50 at which point they stopped my Herceptin (after #10).  Just recently, I insisted on them taking me off the Betas because I love to work out (Like TonLee) and didn't realize the BB's were affecting my ability to work out successfully.  So, they took me off the Betas (cold turkey which I didn't realize was a bad thing) and put me on something else.  Very bad situation, it was what I would think a drug addict was going through coming off drugs and I had no clue what was wrong.  My heart was going crazy and I was hyper, dizzy, etc.  Finally I called the cardio PA and he said my heart had to settle down.  Ok, so I called my SIL who is an MD and she is the one who gave me the tapering instructions....too late, it is now 3 weeks into all of this.  So I had BP pills from a year ago and she told me to take them (another BB but easier on the pulse rate) and presto next morning, I'm back to normal and doing fine.  My BP during all of this was 144/128 and pulse of 99 which was scary stuff.  The 128 # scared my SIl...I could tell by the questions she was asking.

Anyhow, sorry to ramble on but just want you to be aware that most of these cardios really don't understand chemo and especially Herceptin effects on the heart.

Push for a MUGA which is the gold standard....we all like the Echos best because they are less toxic.  Most of us have had Mugas (or Echos) every 3 months.  I'm on an every 6 month Echo schedule now.

Herceptin issues with the heart are rare.  Your EF will be your guide in all of this!

Arlene

Omaz

Hi Arlene - I am sorry to hear about the tapering!  I didn't know that was a concern.  Glad you are doing better.

TonLee

Arlene,

Wow.  I didn't know about tapering either!  Was that just for the Beta Blocker?

Glad you are feeling better.

ArleneA

I think it is just for the BBs because they slow your system down so much and then you go to something that speeds it back up.  When you think about it, it makes sense.

I'm doing great now and BP even better than before chemo!  Pulse staying around 75.

Who would have thought! 

Thanks for letting me vent ladies!

Omaz

So Arlene what are you taking now for bp?

ArleneA

Omaz:  I'm still on a BB, Metoprolol but it doesn't seem to affect me the same way as the Coreg did.  The Coreg is the one a lot of us EF suppressed girls were put on.  It must be a major BB that really suppresses your heart rate in order for the heart to build back up....just a guess on my part.

I was on the Metoprolol before I was ever diagnosed and when I got the major PVCs they upped the dose two-fold and now I'm back to just one a day.  We'll see what happens.

On a TMI subject....had my annual female exam and she wants me to start using a vaginal cream (hormone) which I'm resisting.  She assures it won't put me at higher risk for recurrence.  She says no ones tissue should be so dry.    I'll ask my onc.

TonLee

Arlene,

There is a trial right now using DHEA cream.  I'm not in the trial but have ordered it and use it daily.

It really has helped.  The downside is, since it is compounded (to use vaginally) you have to get a script, but your onc should be able to do that.  I refuse to use estrogen.  That's playing with fire.

ArleneA

THANK YOU TonLee.  I'll hold off on the prescription and ask my onc next month when I see her for my 3-month check up.  I think this will be my last 3-month and then I drop to 6-months....not sure why but that does scare me.  Guess what we all deal with!

Omaz

http://www.curetoday.com/index.cfm/fuseaction/blog.showIndex/debutripathy/2012/12/11/One-year-of-Herceptin-optimal-for-HER2positive-breast-cancer

This article reports that when herceptin is given at the same time as chemo, 6 months of treatment appears to be about the same as 1 year.  

vballmom

I had my echo last week and I am officially off Herceptin.  I had my 12 weeks plus the first of my Herceptin-only infusions.  My EF results went 60%, 60%, 53% and recently 54% while taking lisinopril.  My MO and cardiologist don't feel that the additional single digit benefit of Herceptin outweigh the risks.  My cardiologist is quite familiar with Herceptin and sees a lot of BC patients.  I'm at peace with the decision, but still scared of the non-options of the future.

TonLee

Vballmom,

Yeah for being done?  I know that's a hard one.  My Onc told me that even though my heart responded to Herceptin badly this time...it doesn't necessarily rule it out for next time.   Did your Onc tell you Herceptin is off the table forever?  Your cardiologist?

I ask because maybe they know something my Onc doesn't!

Also have to wonder exactly how effective Herceptin really is (for me) if the exact same cancer returns...hmmmm.

Thanks for posting that link Omaz!  You rock

vballmom

TonLee, honestly I didn't ask about the next time. My husband was in the room and I decided to keep those dark thoughts of recurrence to myself and I think I'll worry about that if and when it happens.  I also wonder about the other breakthrough drugs. I know TDM1 is supposed to be a super-Herceptin. I assume that's going to be just as bad, but I am guessing.  My MO did not tell me it was off the table forever, but he was pretty clear that he was not having me return for a follow-up to see if I could get back on it.  He told me he wants to see me live another 40 years and I'll need a strong heart to do that.

I asked the APRN at my cardiologist's office about how familiar they are with Herceptin and she told me the oncologists at the cancer center tend to send their BC patients to her.  Then she added, "Plus, she can also see them right through the transplant process if it comes to that."  That really cheered me up.

I may call the cardiologist today with questions.

I am trying to stay upbeat.  Whenever I hear people talking about Herceptin being a miracle drug and saving so many lives, it makes me so sad.  I just pray that my 12 weeks is enough.  I was happy that my MO was in San Antonio and had the results of the PHARE trial, too.  He thinks the majority of the benefit comes from the Herceptin with chemo treatment.

bcbarbie10

Im with you, vballmom. My EF was 72, then 58, then 62. I die of dread each time my onc orders for an echo. Im going for my third every-three-week herceptin next week, and i think he might be ordering a new echo before the fourth one. Keeping my fingers crossed.

ArleneA

Well, good/bad news on the Herceptin.  Thanks for the link Omaz.

Guess I wonder how much, if any benefit, I had from my 10 treatments of Herceptin of which only 2 of my 10 were with chemo.  I only had 4 chems and Herceptin was halted for 2 of those treatments.  I wonder how they come up with these results?

vballmom

Good luck, bcbarbie. It's interesting how differently our doctors handle things.

TonLee

Vball,

I had to smile when I read you didn't want to ask about the future use of Herceptin.  I don't take my husband to appts with my Onc usually for just that reason!  I don't want to upset him.

I'm stage 3.  And I don't lie to myself.  So I don't take him.

Arlene,

I'd wait until there is more data out before doubting the efficacy of your tx.  Though as more and more info comes out, and new txs, I have the feeling a lot of us are going to discover what we did or did not do is considered "bad" tx in five years!  Things seem to be moving so fast!!