HEART FAILURE-HERCEPTIN

Hi:

I also had a developed a heart problem while on Herceptin. I recall being very upset with cardiologist about having to reschedule my reconstructive surgery. My LVF remained OK but I developed an arrythmia on Herceptin. You have a right to be upset. You are only 28 and shouldn't have to deal with all this. I am 54. I was able to complete my Herceptin treatments though. I finished Herceptin in Sept 06 and had reconstruction in October. I remember being angry with cardiologist when he reminded me that I have only one heart (the implication being that I had two breasts). Anyhow, all is well now. All of the stuff just seems to drag on but you will get past it.

Hotmedic, I am so sorry you're going through this. Do you mean your LVEF went down to 40% or that it actually went down 40%? Like was it 70% and now it's 30%?

My LVEF went from 67% to 33% and I was permanently taken off herceptin. When they were doing the trials, participants were taken off permanently that dropped over 15 digits (according to the studies I read). I have been off Herceptin for six months with no improvement. However, I'm not convinced that Adriamycin didn't cause at least part of my problem.

Do be careful. I ended up having a heart attack. I'm sure you'll adjust to the meds and they will quit making you sick.

You are so young and I just cannot tell you how sorry I am.... hopefully you'll be able to get going with the reconstruction soon. Better days are coming.... just hold on tight.

With prayers and best wishes,

Miss S

Shoot Hotmedic. With all the promise and hype Herceptin brings it must be shattering to have your trerament brought to a standstill. Like others have said the CHF may have been caused by the Adriamycin...perhaps your function will improve over the next few months and they can try the H again. Is Tykerb as cardiotoxic?

It sounds like your heart failure is from the Adriamycin and not the herceptin.  Both can actually cause heart damage. 

I was dx'd with congestive heart failure/ severe cardiomyopathy in May 2007.  I have never had high blood pressure, high cholesterol, don't drink, don't smoke, not overweight, etc. and my heart cath showed absolutely no blockages.  The cardiologist attributes my heart damage which was in the left ventricle to the Adriamycin.  

The cardiologist actually said it can take 5-7 years for the heart damage to show up.  Mine didn't show up until 6 years later.   My Ejection Fraction actually got down to between 18-22% depending on the test.  They put me on 8 heart meds including Coreg.  I am now down to 5 and the cardiologist hopes to get me down to 2.  My understanding is that I will be on the Coreg the rest of my life.  My last echo showed my heart was functioning near normal which is great!  It means the drugs are working.  Most days I feel pretty normal.  But it doesn't take a lot for me to over-do it and then I am absolutely exhausted.

I know this has to be incredibly difficult for a 28 year old.  You are so young to be going thru this.  I'm 52 now and it depresses me to go to he cardiologist office!  And it depresses me to take all the medicine.   It took me a good 6 months to adjust to all the meds....especially Coreg.  The cardiologist wanted me on the maximum dose and it made me feel terrible.  But it did get better after about 3 months.  I've been on a low sodium diet  (< 2,000 mg daily) now for almost a year to keep fluid from developing around my heart.  Read your labels because most processed foods are high in sodium.  I was also told to weigh myself daily.  I have to notify the cardiologist if I gain more than 2 lbs in a day or 5 lbs in a week which can indicate fluid retention.

The fact that you are under the care of a cardiologist is a plus.  Supposedly a cardiologist does a better job in treating heart failure than an internist or gp.

Being dx'd with the heart failure has been more difficult for me than being dx'd with aggressive bc!  It scared the beejeebees out of me. And I don't feel like anyone out there understands what I am going thru and I can only imagine how difficult it is for you at age 28.   Don't let yourself sink into a depression because that doesn't help heart failure.  If necessary talk to your dr about an anti-depressant. 

I just noticed that your bc characteristics are very similar to mine.  You just developed heart problems a little sooner than me.  BUT...you caught yours very early and that is GREAT!!!!!! Plus your EF is still much much higher than mine was.  55-60% is normal so yours is not terribly low.  Your EF will probably be back to normal very quickly.  You just need to make sure they monitor your heart function regularly if they start you back on herceptin.  I didn't do Herceptin because when I was dx'd back in 2001 it was only offered for Stage 4.

Everything is not hopeless!  Just think of this as a bump in the road.  You're not moving past all this quite as quickly as you would have hoped, but you will get there!

Take care.

Debbie