HER2 Support Group Forums - View Single Post

Marily · 03-21-2006, 10:50 PM

Hi Tricia, There seem to be two things coming out lately about heart and Herceptin. It was felt only at the beginning of treatment would you have heart problems show up. But now people are having problems and going into heart failure years into treatment. That is why I would get a cardiologist that is knowledgeable about Herceptin and Have a Mugga, done... My Dr also has now done a stress test. Do this before you start the Herceptin to get a baseline. I was in a group of Herceptin girls. In the past 5 years 3 out of the 6 of us had heart failure 2-3 years out... I come from a very heart healthy family and have relatives living to 100+ so last year 4 years out, when I started complaining of pain over my left shoulder and to my shoulder blade, down to my L under my arm, and underneath my sternum, swelling in my abdomen, and shortness of breath. And I was unable to lie flat at night... Everyone just said oh you are ok , you have indigestion or some intestinal bug. I kept complaining but my Dr's just did not hear me...finally they had me walk with an o2 monitor all over and I my sats would go up and down, 73% 89% 92% Up and down, which they could not understand? Nothing would show heart failure. (My PCP ordered a stress test but they could not get me in for a month...)I never had swelling of the ankles, which is another sign they look for and my lungs were clear!! Finally I was sitting up over a table at night to breath, and when I walked into my next chemo the next Friday... I sounded like I had run a mile, I was literally hoarse from mouth breathing!
But I had just walked slowly into the clinic.... Next day I had that test ordered...When I arrived for the test, I knew... and told them if they went ahead and did the stress test I would die! I only wanted and ejection fraction done. Finally someone listened to me...A Nurse.. My ejection fraction had gone from 75% to 23% .....than everyone panicked... So I learned you know your body! Fight with all your might till someone listens... Then get a good Dr who you put all your trust in. My cardiologist was fantastic. Treated me aggressively, and in three months I was up to 53%... She wanted me back on my Herceptin. So I would be safe! So find a Dr who is in the know. And watch your Heart. We do a scan every three months. Now. And if I have a problem she gets me right in. Hugs and good luck with your treatment... be a good advocate for YOU... Marily

03-21-2006, 10:50 PM	#3
Marily Senior Member Join Date: Mar 2006 Location: Aurora CO Posts: 75	hEART and HERCEPTIN Hi Tricia, There seem to be two things coming out lately about heart and Herceptin. It was felt only at the beginning of treatment would you have heart problems show up. But now people are having problems and going into heart failure years into treatment. That is why I would get a cardiologist that is knowledgeable about Herceptin and Have a Mugga, done... My Dr also has now done a stress test. Do this before you start the Herceptin to get a baseline. I was in a group of Herceptin girls. In the past 5 years 3 out of the 6 of us had heart failure 2-3 years out... I come from a very heart healthy family and have relatives living to 100+ so last year 4 years out, when I started complaining of pain over my left shoulder and to my shoulder blade, down to my L under my arm, and underneath my sternum, swelling in my abdomen, and shortness of breath. And I was unable to lie flat at night... Everyone just said oh you are ok , you have indigestion or some intestinal bug. I kept complaining but my Dr's just did not hear me...finally they had me walk with an o2 monitor all over and I my sats would go up and down, 73% 89% 92% Up and down, which they could not understand? Nothing would show heart failure. (My PCP ordered a stress test but they could not get me in for a month...)I never had swelling of the ankles, which is another sign they look for and my lungs were clear!! Finally I was sitting up over a table at night to breath, and when I walked into my next chemo the next Friday... I sounded like I had run a mile, I was literally hoarse from mouth breathing! But I had just walked slowly into the clinic.... Next day I had that test ordered...When I arrived for the test, I knew... and told them if they went ahead and did the stress test I would die! I only wanted and ejection fraction done. Finally someone listened to me...A Nurse.. My ejection fraction had gone from 75% to 23% .....than everyone panicked... So I learned you know your body! Fight with all your might till someone listens... Then get a good Dr who you put all your trust in. My cardiologist was fantastic. Treated me aggressively, and in three months I was up to 53%... She wanted me back on my Herceptin. So I would be safe! So find a Dr who is in the know. And watch your Heart. We do a scan every three months. Now. And if I have a problem she gets me right in. Hugs and good luck with your treatment... be a good advocate for YOU... Marily