Calling all stage iv sisters

[marttalam]

Hello everyone,

My name is Michele and I just found this site! I am not a newby to breast cancer since I've been fighting this dreadful disease for the past 20 months. I stumbled on this site because I was googling the drug herceptin. So a little history before my questions. I was diagnosed with IBC stage IV with bone mets on November 3, 2011. I started FEC mid Novembre and had 4 cycles, then changed my treatment to weekly taxol for 18 weeks as well as herceptin every three weeks after seeking a second opinion. I finished the taxol in June 2012 and had a mastectomy of the right breast and full nodes removal under the arm. I decided not to do the radiation at this time, I chose to go on tamoxifien and continue with the herceptin because my cancer is HER2Neu+++ and hormone +++. In November 2011 my markers were in the 1000 and my tumor markers were about 21. Today everything is very well, no more pain and my markers are back to normal; 30 and tumor markers are 1.8!! YOUPPI! I continue on the herceptin every three weeks, tamoxifen every day and Xjeva injection (donosomab) once a month for the bones. My question to you ladies is how long can you remain on the herceptin if you are NED? If I was stage III, they would stop the herceptin after one year, but for stage IV what is the protocal??? I've spoken to a few oncologist and not one can agree on what to do? Please help me, I'm looking for other ladies in my situation that have been on herceptin for a while!!
Thanks