• Clinical Trial Impact becomes Personal for Advocate in Science Member



    Guest post by Komen’s Advocates in Science (AIS) member, Karen Durham.

    After finding a suspicious lump in October 2008 and undergoing a series of tests and scans my diagnosis was confirmed in Feburary 2009 – I had metastatic breast cancer. After much discussion with my oncologist, she began searching for a clinical trial that I could participate in.

    Within a month, I enrolled in a trial that compared the standard of care with the standard of care plus a drug that was approved for certain leukemias. Scientific evidence suggested this drug might be useful in solid tumors like mine.

    As a member of Komen’s Advocates in Science (AIS) community, I had attended the San Antonio Breast Cancer Symposium in the past, and when I received the 2013 Program in the mail and saw that “my” clinical trial was going to be presented , I knew I would be attending again.

    I don’t know if I can adequately describe the surreal feeling of sitting in a huge auditorium, packed with thousands of people, to hear the results of my own clinical trial. I was very fortunate to have several Komen AIS members, some Komen research staff, and a very dear friend sitting with me for support. I knew that my cancer had not grown in nearly 5 years, but did not know how the rest of the trial was progressing. I was both nervous and excited to learn more.

    The principle investigator (PI) began his presentation and the slides revealed the side effects of all of the patients on the trial. I took a mental inventory and confirmed that I experience every single side effect listed. For me, this was slightly, and strangely, comforting. I reported my side effects to my oncologist, but had no way of knowing what others were experiencing or what they were reporting. I was surprised when the PI presented the progression free survival (PFS) data. On average, patients on my arm of the trial experienced twice the PFS time. I was ecstatic, to put it mildly!

    After the Symposium, I talked with the PI by phone and we have exchanged several emails. I am extremely fortunate—I don’t think many clinical trial participants ever have the opportunity to actually meet or talk to the PI in charge of their trial. I think the best one word description I can put on the experience is “AWESOME”. When I think of how my participation in this trial will possibly help someone else in their journey, I feel so honored to have been able to participate. Not to mention the personal gratitude I have for my 57+ months of PFS.

    Read more about Komen’s research into metastatic breast cancer.

    Read more about Karen’s story in Chronicles of Hope.

    We talked to Karen about the importance of being a patient advocate during the 2013 San Antonio Breast Cancer Symposium:

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