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 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:
About the author
Nancy G. Brinker promised her dying sister, Susan G. Komen, she would do everything in her power to end breast cancer forever. In 1982, that promise became Susan G. Komen and launched the global breast cancer movement. Today, Komen is the world’s largest grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find the cures. Thanks to events like the Komen Race for the Cure®, we have invested more than $1.9 billion to fulfill our promise, becoming the largest source of nonprofit funds dedicated to the fight against breast cancer in the world.