Has anyone had to stop Herceptin due to cardiac side effects

Slainte i also have heart issues and the onc said it would be fine for me to take herceptin, but i need an echo every two months. I start chemo 10/27, will post as i can.

mtndawn, my last echo was down to 53% and I'm really afraid of what this next one will be.  I've been supplementing with CoQ10 in the hopes that it will help but who knows.  Have you tried any supplements or is that off limits or unnecessary with your medication?  Interesting that they treat with bp meds.  Is that it or heart meds also?  How long have you been off your treatment schedule?  I have four months of H left to go! 

Dawn, hope the meds did their job and you're back in the infusion chair next week!  We are so fortunate that the effect is temporary and treatable, although it's still frightening- both to be off Herceptin and to have reduced heart function.  All the best to you!

I had 6 rounds of FEC followed by herceptin. My ejection fraction went from a baseline of 52, prior to FEC,  to 46, after 9 treatments 3 weeks apart, at which point, herceptin was stopped for 12 weeks. Had the next MUGA and I was up to 59 (!?!). Went back for a loading dose and will be on herceptin until December 31 (Happy New Year!). I never felt bad - work at a demanding job and bike on a stationary bike for 30 minutes or take a 3 mile power walk every night. I also take CoQ10 and wild salmon oil. I don't think that you "feel" bad until you hit closer to 40 ( but who wants to?). Symptoms would probably include fatigue, weakness and shortness of breath 

Hi...  Was looking for some other stories about this situation.  I too had to stop Herceptin due to lower EF.  Baseline was 74 before starting chemo.  Had AC, then Herceptin with Taxol 4 treatments, then 2 treatments of Herceptin alone before the MUGA  showed EF down to 55.  Took a month off, had another MUGA and itwas better, 59, but not good enough to get H.  My onc said to wait another month, have another muga, if it is not better, then see  a cardiologist.  What is an echo?  Is that a test the cardiologist will do?  Onc said if I go that route, they could start me back on H OR after 2 months of being off, it is recommended to stop permanenetly.  Yet another challenge and decisions to be made.  Thanks for sharing and listening.

L.

mtndawn - did you find out yet if you can go back on herceptin?  How many months or times did you have the herceptin?

I had the herceptin each week with my 12 weeks of taxol and then once every 3 weeks for another 3 months. Then my ejection fraction had fallen to 25. I did have an EKG 3 months before this and the ejection fraction was fine. It has now come back up but my cardiologist said that on patients that he has seen go back on herceptin it is harder the 2nd time to get the ejection fraction back up there if it goes down again so both doctors and I decided I had enough of the herceptin. Really, they do not know yet if we need a year or not. I do believe they give less in Canada and there was a short Finland study that showed 9 weeks is enough.

Slainte- I wouldn't worry about the effects until you actually have to deal with them.  Until you know you're individual response, it is a moot point.  I had it go wayyyyy down and the onc let me continue under the observation of a cardiac doc. (in the 20's)  I'm now back at normal.

good luck to you.

Haven't had to stop herceptin as of yet -- have had 5 rounds with  TC every 3 weeks, but have had to get cardiac clearance.  Baseline muga 70%, dropped to 52% after round 3, back up a bit (2 % points)after starting on coreg and enaprolil (spelling wrong).  Now experiencing cardiac symptoms -- short of breath often.  Have an echo on Monday so we'll see what's up.  Hoping to be able to stay on the herceptin . . .

1marmalade1 - sorry to hear about all the times they have had to stop herceptin. It is good they are catching it early though. Mine had dropped to 25%.   Am I correct in that you are in Canada?  How many herceptin treatments are you supposed to have left?

No I had absolutely no warning signs until after they told me it was that low. Of course, I have fibromyalgia so could have been attributing my fatigue, to a flare-up of that when in fact it was probably my heart function being way down. That is cool that you like to visit American cities. I used to spend summers up in Geraldton (sp) if you have ever heard of that in Canada.

1marmalade1 - well make sure you let me know when you hit Wisconsin, if you are in my area we can set up lunch (I have no problem coming up with excuses to eat LOL). That is awesome that you have been to 32 states. Have you been to Hawaii and Alaska already? I am not even sure if I have been to 32 states and when I was a kid we would go on 3 week long camping trips in the summers so I hit a lot of them, then spent a lot of years doing a lot of NASCAR races, now it seems like I have friends all over the place and even a son who is moving to Kentucky, so more road trips.