I received infusions for a year starting Jan. 2005 after a recurrence. Then, in 2007, after another recurrence (third time in same breast), my oncologist started it again in Feb. 2008. Currently receiving H every 4 weeks for 3+ years now (3.5 + 1 years since 2005). I haven't found anyone who is receiving H long-term
I have been on Herceptin since June 2004. I was diagnosed with Stage 3B breast cancer in April 2003. In April 2004 it changed to Stage 4, when tumors in my liver and brain were found. I started taking Herceptin and Navelbine in June of 2004. The Navelbine ended in October, but I have been taking Herceptin continually since then, every 4 weeks. We recently changed it to every 8 weeks.
I called Genentech, the makers of H, last year to ask about long-term use of Herceptin. I was told that it has been on the market since 1989, and that there are people who have been receiving it since then. They didn't seem to have any interest in tracking long-term users, so I decided not to worry about it. Apparently, there are at least 2 other patients at my oncology clinic who have been taking it longer than I have, but I don't get to know who they are because of HIPPA. Which is why I am on line searching for a support group.
I don't detect any side effects in myself, but it makes me feel better to know that there are other people out there taking Herceptin long term. I hope this helps.
- Herceptin Information for Consumers
- Herceptin Information for Healthcare Professionals (includes dosage details)
- Side Effects of Herceptin (detailed)
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