[shelleyd]

I got started as a patient advocate by volunteering to speak with anyone in the trial who asked to speak with another participant. Some people have questions and concerns and want to hear others experiences. Then once I was finished with my own vaccine, I told everyone in my town and started to volunteer with Pennies in Action 501c3 to help raise funds for the trial. I asked my doctor how I could help others. Soon newly diagnosed patients in my hometown started calling me and one referral led to another. I also participated in NBCC LEADS course, and took another patient advocacy course by the Alliance for Cancer Clinical Trials. Also, I enrolled at the University of Miami Online course for Patient Advocacy. This is a one year post bach certificate program offered online for people who want to set up advocacy practices. I also started to attend SABCS and other immunological meetings to learn more.

I am very grateful for my own experience and I strive to help the researchers develop and get other cancer vaccines FDA approved. I also want to provide support to women not as fortunate as I have been. I am involved in Complementary and Integrated care through Annie Appleseed Project. They are wonderful and offer many non-tradtional options for those who do not want or cannot tolerate traditional treatments. Ann Fonfa is a wonderful leader and teacher who managed to find her way out of Stage IV lobular BC through non-traditional means.

I think you had asked the question about Dr. Czerniecki's trial. They did add tamo for Er rec positive patients but I don't think they needed to ammend the trial since there was no inclusion or exclusion for these kinds of drugs. I will ask him. Keep in touch. Shelley