Oh no, my heart!

gailejames · 09-14-2013, 12:35 PM

Just found out that I have to discontinue herceptin. At least until I see the cardio doc. Cardiomyopathy was diagnosed! I knew I felt really bad, but thought it was the after effects of taxol and then the 3 weeks of herceptin. This is a very scary development.

Jackie07 · 09-14-2013, 01:51 PM

I was not given any diagnosis when I had to discontinue the weekly Hercetin treatment due to reduced MUGA score. I did experience swollen ankles/knees as early as post the fourth tri-weekly TCH infusion. I thought I had exercised too much (mainly walking back and forth in the living room and the sidewalks in our neighborhood). My oncologist prescribed weekly Herceptin after I had completed six rounds of TCH. I only did 4 weeks before the MUGA dropped further. (I think the criteria is a more than 10 % drop.) It was a recurrence at stage IIB, and it's been six years so far without any problems. What was your staging?

Here's a link about cardiomyopathy: http://www.mayoclinic.com/health/car...ION=prevention

tricia keegan · 09-14-2013, 03:51 PM

Usually if this happens a short break from herceptin will reverse the damage and Herceptin can continue, good luck!

'lizbeth · 09-14-2013, 05:31 PM

It does sound scary, but you don't have all the details yet.

The cardiologist will check you out and help you determine your options.

Prayers for you that is something minor and totally fixable with rest or medication.

vballmom · 09-16-2013, 05:59 AM

There are quite a few of us that had a Herceptin holiday and were able to get put back on it. I got pulled after my first Herceptin-only infusion, but was approved to continue. I have one more to go. How many have you gotten? It is too early to panic - take a deep breath, and go forward one day at a time. Hugs.

PatE · 09-16-2013, 11:41 AM

My Cardiologist put me on Coreg and Lisenipril to help support the heart muscle when I had a drop three years ago, I believe there are others on the board who have also been given meds for the heart. I was off Vitamin H for 3months, then went back doing weekly doses.

Last week I got extremely ill, think food poisoning may have started the episode, I was admitted to the hospital and they did an echo which was 35 so now I am on another Vitamin H break.

Has anyone out there had to come off twice? If so were you able to rebuild your heart strength enough to go back on Herceptin?

Your Cardiologist should be able to help you get the function back quickly so don't worry yet.

Best Wishes,
Pat

karen z · 09-17-2013, 04:07 AM

I agree to take deep breaths and go for a one day at a time mentality. Good luck and my thoughts are with you.

KsGal · 09-17-2013, 07:13 AM

I think with most people a short break from Herceptin is all that is needed, although I certainly can see how that would be scary! Big hugs to you, and lots of prayers and positive energy for a quick recovery.