Herceptin Heart Attack

JulieLynn

Hi Ladies,

 It's been quite a while since I've posted on here.  I was given a break from Herceptin in May due to a drop in EF.  Restarted in June, it stayed stable but wasn't really coming up more so they switched me to three weeks on, one week off.  Echo end of July showed a decrease again, down approximately 15 points total, so then five weeks off.  Had a MUGA last Monday and found out today that my EF is at 47% but there is also weakening of the heart muscle so they will be stopping it for at least six months, maybe a year, and then may try it again if I return to normal.  UGH!!!!  Scared to death....this is supposed to be the miracle drug.  I feel like either decision that could be made - stay on it or stop it - could kill me.  I turned 43 last month.  I'm the first "young" patient that my MO has seen problems in with herceptin that didn't respond to a break.  Anyone else having the same issues?  (forgive me for not going back and reading everything - Hopefully I will be able to tomorrow!)  I completed 28 of 52 Herceptin.

GrandmaV

JulieLynn,  I'm so sorry this happened to you.  You may have gotten enough.  As you may know the jury is still out on how long is the right length for herceptin.  A study in Finland was for 9 weeks and so far looks promising.   Some of the ladies here had success with COq10 bringing back heart function.   Maybe you could give it try. 

Denise-G

Hi JulieLynn - I am on hold from Herceptin and have been since May 15th - I only had the Herceptin during Taxol then my EF dropped "scarey low" as my MO said.  Sent me right to Cardiologist - EF was like 39 or 40 and started at 65.  Plus my pulse had been 120 beats per minute since A/C chemo.   Cardiologist put me on Lisinopril and Metoprolol.  My heart rate is way down, I am feeling a lot better.   The meds really helped.  Have you been to a cardiologist?  I am 56.  Yes, you are young, but I've heard of other women that young with Herceptin troubles.  You have quite a lot under your belt so don't worry about the break.

My MO told me about the Finland study as well and told me not to worry.  It is hard and I do worry, so hoping to get the all clear to go back when I have my next Echo on Sept 17th.  

TonLee

Julie, I was also 43 when my EF dropped last year.  It really doesn't seem to have anything to do with age, or even prior heart problems...they can't finger why some women have damage and others don't.  My MO won't restart Herceptin after a 3 month break.  If someone is off it that long, they're off for good.

I'm over a year out and still no improvement in heart function.

Jennt28

Sitting waiting for my MUGA scan again. Started H back in March with my chemo so have done 6 months with no drop so far. Very nervous about this time though since I have surgery in a couple of weeks and don't think they'll do it if my heart shows damage....



Fingers crossed!



Jenn

TonLee

Jenn,

Unless your heart goes really low, they will likely do surgery.  My EF never improved and I've had TWO!

JulieLynn

Thanks for all of your support!  I saw my MO yesterday and my cardiologist today.  The cardiologist says they are finding out more that the heart damage Herceptin and Adriamycin cause may not be reversible.  It also can be but there is no time line as to when that should or could happen.  So, for now, I'm on hold.  I have another echo in November and will see what happens after that.  He said the drop was definitely not good and the "diffuse hypokinesia" of the heart was also a worry but to try to stay as active as possible but not overdo it.  He did clear me to have my nipple reconstruction surgery so I was at least happy about that.  One more thing to check of the list!  My MO did tell me there are no guidelines as to how long you can be off before it is restarted.  She said it was given to some patients when it first came out that had done chemo/rads a year or two before.  It's strange how so many docs can have so many different opinions....it would be nice if they could all agree!    Wishing everyone healthy hearts with Herceptin!!  For us with complications, praying that this doesn't stop the effectiveness of the treatments we have received!  So thankful for all of you!

serenitywisdom

Hi,

Just wanted to share that my plastic surgeon delayed my reconstructive sugery until they stopped the herceptin and my EF went back up a little ( although not to the original level it was before chemo) The good news is that since they decided no more herceptin they took the port out and did the reconstruction at the same time.  Now all I need is a nipple reconstruction but they tell me that is done under local so noworries there about the anesthesai issue.  It has been a year and 9 months since the initial mastectomy.  

Hugs everyone

ArleneA

Hi Serenity:  Congrats!  Isn't it wonderful having the port out!!!  Nearly a month now for me and all the puffiness is almost gone.  

I'm having a echo cardiogram done on Monday and all he told me is that is it is a more extensive echo....no clue what that is all about.  I was reading on line about echos and appears there is one where they put a tube down your throat....HMMM!  Anyone had one of these?  I'm hoping it is just the normal echo!

Denise-G

ArleneA - I have had two different kinds of ECHO.  One is a shortened version and one is much longer.  Since I am on hold from Herceptin, they give me the long versions now.   No tubes involved!!  I have another one coming up on Monday - long version.

Denise-G

Had another ECHO - has not improved is still at 39 - was 65 before chemo.  And because of info from my Nuclear Stress Test, they think I did have a Herceptin or Chemo Heart attack.  Of course, cardiologist wanted more tests like a heart cath now.  I said I would do it in a few months.  I need a break. 

JulieLynn

Denise-G...ugh!!  I'm at 47 with EF but no signs of heart attack.  Hope you start to improve soon!!!

Southamptonmom

I finished Herceptin 8/3/12. Had a stress echo yesterday and my EF went from 40% 2 months ago to 50%. I also was having a lot of PVCs and septal wall motion hypokinesia. That has gone away. Phew! Wall motion defects are usually permanent. I thought I really had a heart attack! I am still very short of breath while climbing stairs...

TonLee

Denise,

I am so sorry!  That sucks.

TonLee

I'm 3 months overdue for a check up of my heart and my breast.  I just want to be done with it...and going back seems well, I just want to be done.

bcbarbie10

Get those things done, TonLee, it's better knowing. Goodluck! Might be good news.😊

TonLee

I know BCBarbie, I know.

lol

ArleneA

Yes, TonLee, it might be good news!  Do it! 

TonLee

Good morning Ladies!

Talked with my cousin, she okayed sharing so here it goes.

Back story for those unfamiliar.  She was diagnosed exactly 1 year after me, same triple pos, same breast, almost exact same place!  No nodal involvement.  I encouraged her to ask for a SN biopsy ONLY.  (She is active.  Retired firefighter, runs a spinning pilates studio...VERY active).  She got a lump, rads, TCH, and SN biopsy.

Early on in Herceptin her EF went down a few points, per MUGA.  At her second MUGA it had gone down a little more.  But the 3rd MUGA showed it "went back up."

Her Onc said he wouldn't give her any more heart tests since she only had 3-4 more Herceptin and her heart was "improving."

While she was with me in Texas (for my reconstruction) she mentioned her heart was skipping beats.  As a trained paramedic, she wasn't overly concerned because she drinks a lot of caffeine.  However, I felt her pulse and it literally went, hit, hit, NOTHING, hit.  Every 3rd heart beat was JUST NOT THERE.

She's not a big researcher.  So I encouraged her to demand another heart test.

She kinda shrugged it off because her Onc (the "professional") said she wouldn't need another.  Everything seems ok now.  (HEADS up to all you who have Oncs like this.)

When the latest study showing heart damage 5 years out came out, when I became aware of it, I sent her the study and strongly encouraged her to get her heart checked.

She did.  Called the Onc (the one who said heart tests aren't needed), and got them.

Below is what she told me.

"I wore a halter (EKG) for 48 hours and out the 230,000 heartbeats, 10,000 were PVC's or PAC's. The cardiologist wasn't really concerned until he was reviewing the echocardiogram with me. He told me that it measured my ejection fraction between 50 and 55% which "anything above 50% is normal". I told him that my original MUGA was 69%. At that point, he was concerned. He ordered another MUGA. Had it yesterday.

I saw my oncologist today and he said that it showed my EF as 80%. It's an inaccurate reading. He suspects because of all of the extra beats that my heart
is pumping, and since the MUGA measures blood flow through the chamber somehow it's calculating that. The onc said that the echo was probably
accurate (whatever accurate is here).  I will not be receiving my last 2 herceptin treatments."

So it appears that the MUGA is acceptable and accurate if you aren't having extra, or skipped heart beats.  If you are, then the ECHO is the more precise test.

Here's what's really scary to me.  Like I said above, she's a trained paramedic.  If she wasn't, if she didn't notice the heart skipping thing....her Onc would not have given her any more tests because "everything seemed ok" according to the MUGA and she would be getting two more infusions of poison to the heart.

Turns out, her EF NEVER went back up....the MUGA was wrong.

I was told this week that women who don't have an improved EF within 12 months of stopping Herceptin only have about a 5% chance of it improving over time.  Add to that the latest information about 5 years out and no plateau, and the odds are actually greater the EF will get WORSE with time, not better.

What I learned from this is, if you think you're heart is not right..and the MUGA says it is..ask for an ECHO.  I've had both, and the ECHO confirmed the MUGA results.

ArleneA

Interesting TonLee and thanks.  Guess I'll be rescheduling that Echo that I had to postpone.  Last MUGA showed 65 but you know what I feel fine.  I am having a difficult time getting back to my pre-bc running pace.

ArleneA

Interesting TonLee and thanks.  Guess I'll be rescheduling that Echo that I had to postpone.  Last MUGA showed 65 but you know what I feel fine.  I am having a difficult time getting back to my pre-bc running pace.

ArleneA

My deleted post was a duplicate.

TonLee

My biggest "symptom" is leg swelling....Onc confirmed that IS NOT left over from taxoterrible....cardio confirmed it is a SE of low EF...not enough umph to get that blood back up I guess.

bcbarbie10

ArleneA and TonLee, good luck on the scans! Keeping my fingers crossed for the both of you! 😘

CoolBreeze

Hey ladies.  I figure you are the experts on this stuff so I wonder if you can answer a question?  I've been on herceptin since December 2009, off and on, mostly on.  (I have mets).   My MUGA has always been about 69.  My last MUGA just dropped to 58.  It's still within normal ranges and my doctor gives herceptin until it goes below 51.

But, I'm concerned.  Have you seen a drop like this go back up again?  Could it be a one-time thing?  Or, is it the beginning of a slide?

Having mets means I need my herceptin.  I would be terrified to give it up.

I don't think I have any symptoms that could be attributed to heart.  Minor shortness of breath maybe - but that comes and goes anyway.

Thanks. 

Omaz

Hi Coolbreeze - There seems to be some variability in ECHO/MUGA readings both with time and between the two methods.  You could ask to have an  ECHO and see what that says. It could be flutuation - and will go back to 'normal' next time.  I think if I were you I would ask for the ECHO, that way you have more information about your heart function.  If it looks good to the cardiologist that would be reassuring.

TonLee

CB,

That's a pretty big drop.

But that doesn't mean it will go further.

Doesn't mean it won't either.

I'm sorry, but it really seems to be random.

I believe tho, that if it is affecting the heart with a lower EF, then it will continue to do so.  I know that is not what yhou want to read...just keep an eye on it...you're still well within normal range so you shouldn't have many. if any, symptoms.  And even if you go below 50 EF, there are often STILL no symptoms.

Good luck to you.

Omaz

Coolbreeze - to note, if you haven't had an ECHO before it is probably the easiest test in the book.  Just lay on a bed and get wanded.

ArleneA

Hi Ladies:

Getting ready to purchase new cookware and looking for the safest ones healthwise.  The green pans look great but the jury is still out on their contents.  Good old iron is probably the safest but what a pain seasoning after each use. 

Suggestions on ones that have little (or no, of course) health issues.

Thanks and hope everyone is having a great Friday!

Omaz

Hi Arlene,

I have a couple of these "Ozeri Green Earth Textured Ceramic Nonstick Frying Pan, 100-Percent PTFE and PFOA Free " and cast-iron too