Getting Off Herceptin

[Christine]

To all my HER2 Sisters,
After 9 years of treatment and endless ECHO-cardiograms, I made a personal decision to discontinue Herceptin last February.
Although my heart was doing well, my ELVF was slowly declining. Initially it was measured at 70%, the last one showed it at 50-55%. I discussed this with Dr. Slamon at the spring AACR meeting. He supported my decision with the provision that I be closely monitored. I mentioned that I had been using the HER2 Serum test and that my oncologist would continue to include that test along with other standard markers. Dr. Slamon was completely comfortable with my plan. I will also be measured using the CEA tumor markers as it was only the CEA test that had indicated my recurrence in 1999. Even then it was only slightly elevated @ 2.59
My HER2 Serum test has always been in the 5.2 – 7.8 range which is well within the normal range. I will continue to be monitored with MRI brain scans.
I have been feeling very well lately. My vision has markedly improved after having cataract surgery last year on both eyes and I have returned to driving again.
I do not recommend discontinuing Herceptin to everyone. When I was first tested for the HER2 gene in 1999, the pathology report stated that I was strongly positive by IHC 3+++ and also stated “strongly 3+”. My initial response to Herceptin was nothing less than a miracle. I personally know of only few others who were as highly receptive as myself.
Hugs
Christine