weak heart with herceptin

I understand your concern Vicki. I finished chemo last year and a few months later was told that I had cardiomyopathy. My GP is great and when I began having dizziness etc she sent me for a review with a cardiologist. He diagnosed the problem and then referred me to a specialist cardiologist who has more background in dealing with heart failure and problems from chemo. 

I have been told that cardiomyopathy caused by herceptin is usually reversible however for me it seems that it may be more likely caused by AC or Taxol which is a little more challenging.

I've been reassured by my cardiologists that there is still plenty that can be done to improve our heart function post chemo so maybe you could ask to see a cardiologist yourself so that you can get the answers you need from someone who specialises in the area.

Good luck with you quest for answers. I would be happy to chat to you anytime you like.

Polly

Hi Vicki, I completely understand your concerns. I had a loss of heart function while taking Herceptin and like you it was picked up during one of the regular scans. I was also feeling very tired and a little breathless. My oncologist referred me to a cardiologist and I was put on heart tablets for the remainder of my treatment. I also had a short break from treatment while all that was being sorted out. I was able to complete the 12 months but had tighter monitoring from both the oncologist and cardiologist during that time. I stayed on the heart tablets for some months after I finished and my heart function improved and although not back to pre-treatment levels it is well into the normal range and I no longer see the cardiologist.

If you are concerned about any of your symptoms while you are waiting to see your oncologist head into the hospital so they can check you out. It sounds as though your oncologist is on to it and hopefully they can give you some reassurance and guidance when you see them next week. Best wishes, Jane xx

Dear Vicki,

It’s Lisa from the Policy Team. Thanks for sharing your concerns. It’s normal to have questions about how you are feeling and responding to treatment. It can also be hard to take in so much new information. You might find it helpful at your next appointment to write down some questions beforehand and also to take a few notes. Some women also find it helpful to bring a family member or friend who can help take in the information.

If you still feel like your questions are going unanswered when talking to your doctor or oncologist, you might find it helpful to seek a second opinion.

Another great resource is the Cancer Council 13 11 20 Information and Support Service. This is a free, confidential telephone service run by trained nurses who can also answer questions you might have. Here’s a link to more information.

In the meantime, if you are experiencing physical effects and are concerned about them, we would encourage you to see your doctor.

If you think it might be an emergency, we would encourage you to seek urgent care.

All the best,
Lisa

Hi Vicki  Sounds like they are looking after you well, as Georgina Mary advised you arent too bad.  When I was having hercepton my onc advised that sometimes they get a heart doc involved if need be to more closely moniter things - so they have probably got lots of things to try before your heart stops.

I'm not in your boat, but have heard on this site that there are other drugs - is one Perjetta??  But what I'm reading in your comment is that you need to be getting more info from your docs??  Don't finish your appointment until you get some answers - you have enough stress with out worrying about things that probably aren't worth the worry.

Pam

I have heart failure from contracting a virus back in 2004.  My ejection fraction dropped to 23% before I was diagnosed, and I could have dropped dead, the doctor later told me.  I was put on special medication and now I am generally around 50% and live a normal life except that I get puffed on stairs and hills.  It does add a bit of interest to operations, as I get questioned very closely about it by the surgeon and the anaesthetist every time.  A normal ejection fraction isn't 100%.  It is between 55% and 70%, so you are not as far down as you might think that you are.  Those symptoms are normal for a lowered ejection fraction.  I can't answer your Herceptin question, but be sure that your doctor will monitor your heart closely and not let you drop to dangerous ejection fraction levels.