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Dear Patty
While it is always scary to find out something isn't work, this doesn't mean that the next thing won't work well. And you have MANY options left. I had EXTENSIVE bone mets EVERYWHERE and lung mets. I failed navelbine and figured my live was over. WRONG!
I went on Gemzar and xeloda with herceptin and had almost a complete response for a year. My bone mets almost completely disappeared except for a very tiny one left.
You are so right to get other opinions because there is so much left for you to try:
Navelbine,
Gemzar
Xeloda
Abraxane
Doxil
Oxaliplatin
etc.
If you want to go to UCLA the number to make an appointment with Dr. Pegram is 310 829 5471. But there are many fine people across the country closer to you. For example, Dr. Melody Cobleigh in Chicago at Rush Presbyterian, Dr. Kathy Miller at Indiana U, and I am sure the Mayo Clinic has people as well. Wherever you go for your opinion, be sure it is an oncologist who specializes in breast cancer.
Don't despair and don't look at your tumor markers and think that they tell you what the future holds. You might have a great response for a long time and then some other drug will be available.
Finally, like Christine said, you MUST be on a class of drugs called bisphosphonates for your bone mets. There are several in this class but the one that has shown the best results is zometa.
Take a deep breath, look at your options and know that you have many good choices open to you.
With a hug,
Rosie
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