Herceptin Heart Damage

I don't have much to add, but I thought I'd give this a bump for you.

Talk to your Dr. about your concerns.  Yes, heart damage is a possibility on herceptin (as it is with Adriamycin), but in the vast majority of cases it does reverse when Herceptin is stopped.  They also do a MUGA scan (or echo cardiogram) to monitor your heart.  CoQ10 is also being studied to prevent any heart damage.

It is true that Herceptin can cause heart damage, but far more people sail through with no issue; that said you need to make the decision if its a risk you can live with.  Statistics are great, unless you're on the wrong end of them.

Talk to your Dr., and also check out HER2support.org, they have information there too. 

Good luck with your decision. 

I just finished my year of Herceptin and only had to skip one month due to a decreased heart function. The ejection fraction had gone from 56 to 50. I started taking CoQ10 and really taking it easy after the infusion and it slowly went back up.  In October it was up to 70.  Make sure that either a MUGA or Echo is done every three months.  Herceptin shows so much promise for us Her2+ gals. I personally would try very hard to take it but do make sure your doc knows your concerns. 

Best wishes!

Pam

You're oncologist should send you for an echo/muga scan every 3 months, I know it's standard here in the UK to get scans after so many treatments, depending on scans depends on wether or not you get the next treatment.  They will stop the treatment if they see it's doing any damage to your heart, as far as I know if there is lowered functioning it usually reverses after a break of treatment.  I can't imagine that they would place you in any danger...  Herceptin is fantastic, I really hope it all goes well for you.

 Curlygail,

    Your fears are certainly not unfounded.Seems the highest risk is for those of us who have Adryamiacin followed by Herceptin.I had no prior heart problems nor a family history of such.I had completed 7 months of weekly Herceptin treatments and I thought my symptoms were left over from chemo.I couldn't walk 6 feet without gasping for air.The fatigue was unbelievable! Going shopping or out to eat became impossible,I couldn't even grocery shop anymore.I never suspected my heart but when I went in for my treatment my Oncologist said "No way,no more Herceptin,EVER".

 Next stop was cardiologist.He told me that my ejection fraction was 28%.My first MUGA before chemo was 72.I had an enlarged heart and congestive heart failure.I was terrified!He prescribed Coreg,Digitek,Lisinopril and Aldactone and he said that sometimes with meds and time,the damage would reverse itself.And of course,nosy me just had to ask what happens if the meds don't work.He said a heart transplant was the only option.My poor body had already been to the depths of hell and I knew I was to weak for that.I had frequent MUGA scans,ECGs and chest X-rays.This happened in June 2007 and my EF never got above 38%.It had been so long that I expected this was a life-long condition.I had a scheduled ECG the Friday before Valentines Day.I asked the woman to tell me the results and she said she wasn't allowed but luckily my Cardiologist walked down the hall and he gave her permission to tell me.My ejection fraction was 59%!!!! Normal,heart not enlarged ,no congestive heart failure.God is so good!So if anyone does have to deal with this,it will get better just stay strong and pray hard.We deal with so many things that it seems so unfair when our treatments almost kill us too.If anyone would like to talk about it,I'm here to listen and answer anything I can.God bless.

Hi Lisa, 

Your story interests me because I was dx'd in 2007 with congestive heart failure/severe cardiomyopathy from Adriamycin I received 6 years earlier.  When I ended up in the hospital I had no idea what was wrong with me or why.  I had not had any problems and thought I just had a respiratory infection but within 4 weeks couldn't walk 4 feet without gasping for air.  My EF was 18%.  It took a year for my EF to get back up to 40% and I just had a  nuclear stress test and it is back up to 52%. 

My understanding is that I will remain on Coreg CR forever.  Is that what your cardiologist told you as well?  The way it was explained to me was about 50% of people can control their cardiomyopathy/congestive heart failure with drugs.  The other end up having to have transplants.  I'm interested in what your cardiologist has told you.

 Wishing you good health!

 Debbie

Thought I'd post an update here. I have had shortness of breath since I was diagnosed with heart failure last year after almost a year on Herceptin. That is a symptom of asthma as well as heart failure. When I had a bad asthma attack in April and was treated with prednisone the shortness of breath went away. So I went to a pneumonologist who said get off Coreg, after I had researched it and found out it was contraindicated for people with asthma because they could die with the first dose. All I had seen before  about asthma and Coreg was to talk to my doctor if I had asthma. I had and he had said that Coreg could not have been causing the gradual worsening of asthma that had gone on for the last year.

After almost 4 month I am still taking extra asthma meds 4 or 5 times a week

I went back to the cardiologist and had an awful appt. He was obviously upset that I was not going to do what he said. I had been at risk for going into an asthma attack I didn't  come out of every day I had uncontrolled asthma symptoms(the shortness of breath) from Coreg but he was really angry I wouldn't stay on it. I will be seeing a new cardiologist in October. I want to hear what he says because I know if my heart function does go back to normal Coreg is usually what I would  stay on for life.

Oh and the cardiologist who said my heart probably would not improve any more was wrong. My LVEF was up again in June. At 35 it still is very low but any improvement means hope for more.

Hi, I am her2-neu positive and I got my echo result, it says I have ef 73. Is it good to start heceptin?

Thanks in advance

Thanks for th info