HER2 Support Group Forums - View Single Post - EF downslide -- doggone it!!!! :-(

StephN · 03-10-2007, 12:50 PM

Dear JoJo -

RATS! I am wondering if you are being sent to a cardiologist to check further what could be going on with your heart. I hope so.

There are virtually no studies and little data for us long-term Herceptin users. They used to say that if we were OK with our MUGA and other heart tests in the first few months we should be able to take this drug indefinitely. And many of us here are taking it indefinitely. AND without regular heart followup as the years go by.

We are the ones writing the new chapter. I am wondering also if it is the ABRAXANE which has lowered your heart functions. You took that for many months.

I will pray the Gemzar has the desired effect and that you get to a good heart specialist to get his thoughts. And maybe some medication to help bring up the numbers.

Let us know, OK?

03-10-2007, 12:50 PM	#4
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Rats! Dear JoJo - RATS! I am wondering if you are being sent to a cardiologist to check further what could be going on with your heart. I hope so. There are virtually no studies and little data for us long-term Herceptin users. They used to say that if we were OK with our MUGA and other heart tests in the first few months we should be able to take this drug indefinitely. And many of us here are taking it indefinitely. AND without regular heart followup as the years go by. We are the ones writing the new chapter. I am wondering also if it is the ABRAXANE which has lowered your heart functions. You took that for many months. I will pray the Gemzar has the desired effect and that you get to a good heart specialist to get his thoughts. And maybe some medication to help bring up the numbers. Let us know, OK? __________________ "When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau Live in the moment. MY STORY SO FAR ~~~~ Found suspicious lump 9/2000 Lumpectomy, then node dissection and port placement Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR - Adriamycin 12 weekly, taxotere 4 rounds 36 rads - very little burning 3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED! 2003 & 2004 no active disease - 3 weekly Herceptin + Zometa Jan 2005 two mets to brain - Gamma Knife on Jan 18 All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying Continue as NED while on Herceptin & quarterly Zometa Fall-2006 - off Zometa - watching one small brain spot (scar?) 2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava 2008 - Brain and body still NED! Port removed and scans in Dec. Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011 STILL NED everywhere in Feb 2014 - on wing & prayer 7/14 - Started twice yearly Zometa for my bones Jan. 2015 checkup still shows NED 2015 Neuropathy in feet - otherwise all OK - still NED. Same news for 2016 and all of 2017. Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.