Herceptin Heart Attack

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,

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.

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!

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.

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.

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!

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!

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....