Herceptin Heart Attack

TonLee

I have 3 Herceptin txs left.

I've been getting tired easy, bad headaches, and my legs started swelling again like when on TC.

After the last Herceptin, I ran a low grade fever, had a tight painful chest, all over muscle aches, and my heart raced for over 6 hours around 130 bpm.

Called the Onc, sent me for chest xray and MUGA (since I was due).

Today he called and said my EF is 48-49% (dropped around 20 points!), and my heart is enlarged. 

I'm not surprised. I knew something wasn't right. 

So the plan is to wait about 2-3 months, take another MUGA and if my EF is up several points..finish the last 3.

If it is still low, I will not finish Herceptin.

Ok...good with all that.

I would like to hear from someone who was forced to stop Herceptin early. 

I'd also like to know from anyone whose heart was damaged by Herceptin and has reversed it.  And how you did that...The Onc suggested some meds to help improve function...but I declined.  Meds always have such crappy SE for me.

So does anyone have experience with getting their ejection fraction up with supplements or whatever?

Consider me totally ignorant on the topic!!

marjie

TonLee - I remember from the chemo thread we were on together that you were very active.  Did you maintain your activity levels all through Herceptin?  For me, there were times when I found I had to scale my activity back a bit because of my heart. 

I have 4 left tx's - had some ups and downs but so far so good.  My cardiologist prefers ECHO's so I have them monthly.

I'll be watching this thread for information too!  I personally know a few ladies who ended up with heart problems "after the fact".....one has recovererd with medication, and the other wears a monitor for now is may likely get a pace maker.

TonLee

Marjie,

Yes I maintained my activity level and still do.

The radiologist today told me it "may" have saved my life...

Here's how they explained it.

Often times the heart enlarges when it is damaged to compensate for not functioning properly.  So whether I was exercising or not, my ejection fraction would have lowered, and my heart would have swollen to compensate.

My heart enlarging and the lower EF was a direct result of damage caused by Herceptin.  (As opposed to something called "Athletes heart" when the heart enlarges to carry endurance athletes...but the ejection fraction doesn't generally go down with athlete's heart, but actually improves...)

Because I exercise and maintain a healthy weight my heart is strong/conditioned, so even with damage it squeezes out more oxygenated blood to my body than a damaged unconditioned heart.

As fast as my EF dropped after the last Herceptin (had a really bad heart reaction to it at the time) without a conditioned heart, he suggested things might have been much much worse.

So the cardiologist actually recommends.....exercise!  lol

I'm researching it all this very minute!  If exercise is harmful, hey, I'll take a vacation from it!  Right now though, everything I'm finding says exercise more, not less.   

marjie

I maintained my activity level although I have been instructed to "listen" to my body.  Sometimes when I am symptomatic, I just ease off a bit.  I do have some LV enlargement but very little change in EF so I am hoping to maintain the status quo.  The echo's do not measure the EF, so my functionality is assessed much more visually now.

My cardiologist feels that the "hard" chemo did some damage more so than the Herceptin.

What a trip this is!

Sassa

Over the course of the one year of herceptin, my EF dropped from 70% to 52% and my heart enlarged.  That was 4 years ago since the end of herceptin.

Since that time, I am physically active, doing both aerobic and strength training.

I had another echo-cardiogram done about year ago (my PCP just wanted to check my heart status).  I was back up to 75% EF and the heart size was back to normal (at what I had at the start of my AC chemo).  I assume my body just repaired itself.

TonLee

Marjie,

I agree.  Listening to our bodies is essential.  I do and have...which is why I was wondering to myself and out loud why all the sudden my workouts were kicking my butt...instead of being the "boost" to kick my energy up and humming for the day, they became an either/or proposition.  Either I work out or I clean house, but I can't do both today.  It was a subtle shift, but ultimately it is exactly what I did during chemo....crazy, but I'm weaker now than I was at any time on TC.

Sassa,

Thank you so much for posting that.  It gives me hope   Were you active during the Herceptin?

marjie

TonLee - I felt the same for a long time...weaker than when I was on chemo but I am slowly but surely getting my strength back.  I think I am handling the Herceptin okay, there is more concern about heart damage from the FEC chemo for me....at least that is my impression from talking to my cardiologist.

TonLee

Marjie,

It really is a crap shoot.  I think I probably started the whole thing with a predisposition for heart issues.

What's good is when I started I was supposed to take Adrymiacin, the red devil.  But at that time there was a week or so where some parts of the country developed a "shortage" and my Onc said if I had my heart set (har!) on AC-TH then he'd fight to get it for me, or I could just go with TCH.

Once given a choice, and looking at the possible SE from each, I chose TCH.  But ya know, I don't think he'd ever have given me the option lest that "shortage."  And I was just starting to research at that point.

All that to say, I'd hate to think what Adrymiacin would have done to my heart if it's less toxic sister gives me issues!  Thank God.

Meeting with the cardiologist in the next week...I'll let you know what he says so anyone reading in the future can have a little taste of what to expect.  (Though in some things, my Drs are almost opposite of most I read about on here....).  So frustrating.

marjie

You are so right TonLee!  Perhaps that shortage was a blessing (of sorts!!) in disguise.  I had the "red devil" and I just hated to see that stuff getting pumped into me

Unless there are developing problems, I don't see my cardiologist again until Feb after I am finished Herceptin.  He's just monitoring my monthly ECHO's right now.

Sassa

TonLee, During herceptin I was riding my bike and walking.  However, compared to the way I felt during my AC chemo, I felt as if I had "boundless energy" as I told my oncologist.

Of course, that wasn't the case as I realize now.  However, my energy and strength continued to improve over the following years (now almost 5 years out from AC, 4 from herceptin) and I do feel great.  I am 61 now and feel better than I did in my 30's.  Of course, in my 30's I was a mother to a young child and working full time.  Exhaustion was the norm.

TonLee

Thanks Sassa,

I've maintained my activity level, however in the last few months instead of it making me stronger I was put back into the boat of choosing if I work out or do I do something else (like clean house) because my energy budget couldn't support both.

Good to know you are back better than normal!

TonLee

Just wanted to give an in-progress update.

Have met with my cardiologist at length and now I'm scheduled for a few more tests.  He said he reviewed the most recent literature (cardiac myopothy from Herceptin toxicity) and there is a 50/50 chance my heart will rebound to normal or near normal within 3 years (if no more chemo) and that goes up to about 75% by 5 years out. 

So I may get it all back, some back, or none.  Heart problems and heredity have a lot to do with this. 

However, in his OPINION if my MUGA next month is above 55% EF I should finish my last 3 Herceptin.  (I'm still undecided tho.)  If it is between 50-55 he doesn't think I should have anymore and believes my Onc won't offer it anyway (ha.)

I asked about infusion times, if doing it over 90 minutes (instead of 30) might lessen the effects on the heart.  He said no.  Herceptin is cumulative damage over the course of tx and infusion times likely don't play a significant role. Damage is about the total time the heart is exposed to it.

He put me on an Ace Inhibitor 1/2 of a 5mg tablet. It drops blood pressure and the load on the heart by opening up the arteries. Since my BP is typically around 100/74 this may not be something I can do as it may drop me too far. But we're trying it. He said the lighter load will give my heart the opportunity to recover if it is going to do so.

I asked him about the CoQ10 and L-Carnitine again. He said it "couldn't hurt." lol 

About exercise. 

NO LIMITS.

Or, do as much as I can.  He said exercising won't cause me to have a heart attack (which was my primary worry)...but I may not feel as strong, endurance will change etc (already happened)...but I am safe to "push" my workouts as hard as I can.

All in all, I have more peace of mind, and the remaining tests are more because of hereditary heart problems in my family than chemo.

I'll keep ya posted!

achpurple

I know it's not the same as your Herceptin damage but thought I might perhaps offer you some hope in the healing properties of the heart.  My husband had a heart attack at the age of 46; never overweight, no high blood pressure, no high cholesterol but he did smoke.  He had the "widowmaker" heart attack - 100% blockage.  When they put his stent in and saved him his heart was working at 25%.  They put him on 8 medicines including ACE inhibitors and said his heart might repair but if it didn't he'd have to have a pacemaker/defibulator.  In three months, it had repaired to 35% and now, almost 6 years later, it's at 40%.  He still takes I think 5 of those medicines - his blood pressure is always low but he has no symptoms at all.  No restrictions on activity level.  It just really has given me hope that the heart can repair itself with a little help and time because one of my biggest worries is with Herceptin heart damage.

marjie

That's great TonLee...my heart function has come back up and I'm still on Herceptin.  I know when I was "pushing" through it, the whole of idea of "as hard as you can" was just less than you expected, but it's all good in the end!

TonLee

Thanks Achpurple...it does help to hear about hearts repairing themselves.

Marjie, you are sooooo  right....I "pushed" today and pfft, while exertion was a 9-10, actual performance was about a 5....

At this rate I'll have to re-evaluate my calorie consumption!  Which bums me out cuz I do like to eat!

marjie

Remember TonLee...it's the exertion that burns the calories!  I have come through this whole process weighing the same as when I went into it which makes me happy.  I was told that it was almost guaranteed that I would gain about 30lbs during treatment.  I know with a cancer diagnosis, it sounds rather vain, but it really brought me down because I always worked hard to maintain a healthy weight. I think I am lucky for sure.

TonLee

Marjie,

I was told the exact same thing!  And by a really snotty nurse who was over-weight and angry about it.  lol  Every time she sees me now she scowls....I love it.

I weigh the same....even though I think technically I am a few pounds lighter (since retaining fluid in my thighs with the heart thing).  But on Tamox I can tell my body is changing.  Muscle definition is much harder to get and maintain (or maybe its been my heart all along and once I get that worked out it'll go back to normal).  A girl can hope!

Right now my biggest complaint is during cardio...I've stopped sweating...not entirely, but a lot.  Generally after an hour of cardio (six times a week) I am dripping sweat onto the floor.  Uh, not so much now.  I don't even stink afterward!  lol

My Cardiologist said that won't change for awhile....bummer.

Oh well.  It is what it is.  I'll deal.

I'm really glad your heart bounced back Marjie!  Gives me hope.  Thanks

marjie

TonLee - perhaps that's your fluid retention...you are sweating on the inside .

208sandy

So glad to see this thread - I finished my treatment three years ago and have had two ECHOs - in the last two years - the one a month ago showed "severe enlargment of left atrial" - my PCP referred me to a cardiologist who I will see in January - I have had NO symptoms - as a matter of fact I have been exercising (walking) more and more every day and even feel energized to clean the apartment (I hate cleaning), go grocery shopping and carry heavy bags a mile home, and do two days of volunteer work at the hospital, I have pretty much picked up where I left off albeit I don't garden anymore (I don't have a garden now) - I had the hated "red devil" chemo and I wonder if that's what started all this - I've been keeping my bp under very tight control - the only thing I've noticed of late is that I seem to be retaining fluid - have to say that the more I exercise the better I feel and my PCP said the same as others "listen to your body, if anything seems different get in to see me right away" - your posts are giving me hope.

achpurple

Please keep us informed as to what the cardiologist says in January.

marjie

Yes - unfortunately I know two women now who developed cardiac issues about three years out.  It is something we really need to be aware of....especially the herceptin in combo with the taxols and epirubicin (red devil).  My cardiologist definitely gets on a soap box as he has seen so many women affected by their treatments....but even he acknowledges that sometimes there are no options - these drugs are saving our lives.

TonLee

Sandy,

While sitting in the cardiologists waiting room, I learned some things from the information feed/video running.  Like, heart disease kills more women than breast cancer does every year.  Mostly because women don't always have "typical" chest pain and tend to blow off the symptoms they do have.

If your heart is compromised right now, and you're able to do all those things you listed, then imagine how much MORE you'll be able to do if it is correctable!  That thought makes me feel better when I stop and ponder this whole situation.  Even with half a heart I can still do more in a day than most of the women I know.  Not that it's a competition.  But it goes a long way in making me feel "normal."  When I can keep up with my healthy gal pals, and my kids, I'm happy.

Marjie,

Sweating on the inside!  Love that!  Stealing it!!  hahaha

Ok, when the cardiologist gave me the AI, he kinda laughed and said I probably wouldn't tolerate it well since my BP is naturally low.  So he gave me 1/2 a dose (5mg) and told me to try it, and if it made me feel weak and tired, half that, and then quarter it.

So yesterday was day #2 at a full tablet.  I didn't sweat when I worked out, felt lethargic all day, and went to bed at 8:30!  I didn't even do that during hard chemo.  In the middle of the night I woke up gasping, GASPING, for air.  If my "running around" blood pressure is 100/70-75, I imagine it gets pretty low at night while I sleep...add the AI and I wonder if it made breathing difficult?

So I didn't take the AI this morning...cut it in half and took it at supper tonight.  I'll see how that works out.  (though 2.5 mg?  how much could it do?)....I don't know how people function on blood pressure meds.....I was more zoned out yesterday than I ever was on chemo....I think my cardologist knows exactly what he's talking about when he said I probably wouldn't tolerate it well.  Oh well, it's worth a try anyway.

If I had it all to do again, I'd still have done Herceptin, but I'd have been sucking down 3000-4000 mg of L-Carnitine liquid every single day.  Live and learn.  My cousin just started TCH last week so she's benefiting from all my trial and error.  She said everyone looked at her kinda strange when she pulled out the peas....buwahahahahahahaha...I LOVE this place.

achpurple

TonLee:  If you really think about it, your heart is working at more than half - yay!  My cardiologist told me that nobody's EF would ever be 100%, normal is between 50% and 70%.  And I believe he said that if it's more than 75% that usually the test is read wrong or there's a different kind of heart problem.  I hope that information is correct.

TonLee

Good way to look at it Ach....!

I just dropped from 69 to 48.3....so not HALF ... lol

I'm feeling really good today, gonna take advantage, get a workout in and hit the local bazaars!

Have a great weekend.

serenitywisdom

Hi everyone,

This week has been quite a trip. I was suppose to be having surgery today for a breast reduction and implant on the mastectomy side.  Instead the surgery was cancelled 2 days ago.  On Monday, I saw the cardiologist cause my plastic surgeon wanted me to since my MUGA changed last time and it was part of the pre op .  I have been on TCH and now Herceptin for 7 months.   On Tuesday, I had a stress echo which showed abnormal results so cardiologist said it was not safe for me to have the reconstruction surgery .  Now I have 2 cardiac tests scheduled for next week  and the cardiac nurse called me yesterday and told me to "take it easy."  I have had no symptoms, she did tell it me it was ok to walk but not up hill and no gym.  They put the herceptin infusion on hold.  Does anyone know if you have to stop herceptin if 7 months is good enough?  I heard that in europe some were only getting herceptin for 6 months instead of a full year.  I feel fine.  

TonLee

Serenity,

There are two studies, one just finished and the other finishes in 2013, that compares 6 months of Herceptin vs 12.  The results haven't been made public yet.  But there are two phase 3 studies where the women are getting 6 months....so you wouldn't be the first person to only get 6....I don't know about you but that made me feel better....lol

Also, I am having a nuclear stress test and echo next week.  My cardiologist said I can exercise as much as I want.  He said exercise is actually recommended for cardiac myopathy (which is what I have since Herceptin damaged my ejection fraction).  The more the better.

Unless you are pre-disposed to heart problems, there is a very good chance the damage can be reversed.  Hang in there.  And keep us posted!

achpurple

TonLee:  When exactly did you have issues after your last Herceptin - like how soon after infusion?

TonLee

I got the infusion Friday morning, and Sat early evening it came on all at once....I spiked a low grade fever, my heart raced like crazy, muscles ached as bad as when on nuelasta.... I thought I was dying, I really did.  After 6 hours of flip-flopping about going to the ER, I just went to bed.

My Cardiologist said that was def a "cardiac myopathy" moment (and to hit the ER pronto next time)...he also told me ANY SWELLING in the legs while on Herceptin (thighs included, which my Onc didn't even check!) is a pretty good sign heart function is compromised, even minor damage can cause the leg issue..so minor it's not picked up on MUGA...but affected all the same.

Learning new stuff every time I see him!

achpurple

Thanks TonLee!  I am always looking for signs since I just got #11 and I get more nervous with every infusion.  It took 6 hours this time because my heart just would not cooperate with infusion.  I just wish that study would come out comparing the six months of treatments instead of one year.

TonLee

I hope it goes well for you....December conference in San Antonio?  Maybe we'll get lucky and the results will come out then.....but I'm not holding my breath....

marjie

TonLee - that is exactly what I had happen after my Hercepton tx's....the joint pain, heart racing/palpitations, and swelling of my legs and ankles.  Like I said, it has all settled down for me but my cardiologist was alarmed that it wasn't being addressed when I would report it.