Finding Trials, Paving the Way for Others, and Advocating for Yourself

Brooke Cole, 41, of Sanford, Maine, participates in a clinical trial studying a breast cancer vaccine for HER2-positive disease. Brooke did this Q&A  for Breast Cancer Clinical Trials Matter to You with our Digital Media Specialist Josh Fernandez to discuss her reasons for participating, traveling long distance for treatment, and more.

Q: When were you diagnosed with breast cancer? 

Brooke: I was diagnosed in November 2011. Following testing, I learned I had stage III hormone receptor- and HER2-positive breast cancer.

Q: How did you discover the clinical trial in which you’re currently enrolled? 

Brooke: I found the clinical trial myself by searching Clinicaltrials.gov.

Q: What is the trial studying?

Brooke: It’s a randomized phase II trial studying a vaccine for patients with HER2-positive breast cancer (NCT00524277). I started it in May 2013, and will finish in May 2018.

Q: What are the treatments and tests are involved in the clinical trial?

Brooke: I traveled from my home in Maine to Baltimore, MD for one day to enroll, get blood work and meet with the trial oncologist. Once accepted into the trial, I traveled to Baltimore every 28 days for the first six appointments. I would have two injections, get more blood work done, and stay to be observed for two-three hours. I then return to the hospital two days later to report any side effects to my trial nurse.

After the sixth appointment, I returned every six months for four visits. I’d stay for three days each time. I am now being followed up with phone calls and questionnaires from my trial nurse.

Q: What factors did you consider while you were making your decision to participate?

Brooke:  The most important factors I considered were the cost and the time I’d have to spend being away from my husband and small children.

Q:  In a 2014 article in our newsletter, Insight, you mention that part of the reason you wanted to do this was to help future generations. Can you elaborate on that?   

Brooke: Cancer is not going anywhere until a cure is found. The way to find a cure is clinical trials. The women who participated in the clinical trials for Herceptin years ago paved the way for HER2-positive patients like me. Did those women know at the time the significance of their participation? Probably not. But I am beyond and forever grateful that they did participate, because Herceptin has saved lives.

I will probably never know if the breast cancer trial vaccines I have received are the next big discovery for preventing or treating breast cancer. I can only hope my participation and the participation of others leads to a breast cancer cure for those who will be diagnosed in the future.

Q:  How would you describe your experience in this trial?

Brooke: Overall, I have had a very positive experience.

My main complaint is the cost of travel and lodging. My family and I reached out to everyone we knew. Whether it was donated airline miles, a ride from the airport, staying with a relative, a friend of a friend or an ACS Hope House. The help we received showed that it CAN be done. There were so many people who were willing to help me get to where I needed to be just by asking. Everyone has someone in their life affected by not just breast cancer but all cancers. Support from my family and friends was extremely helpful with the stress of travel and being away from my family.

Q: What's the biggest piece of advice you'd like to offer to those trying to decide if they should enroll in a clinical trial?

Brooke:  YOU ARE YOUR BEST ADVOCATE! Do as much continuous research as possible. Search clinicaltrials.gov, ask your oncologist what trials are available at the hospital where you are being treated. If you are willing to travel, call the trial coordinator at the largest hospital near you and ask what trials you may be eligible to join. Do this before starting treatment, as many trials are done in conjunction with active treatment

Q: Is there anything else you'd like to mention about clinical trials for breast cancer?

Brooke: There are so many clinical trials out there in the United States for breast cancer. Please find one and enroll. You don't have to travel. Every oncology center has clinical trials of some form. Participate for yourself, for our sons, for our daughters, for their children and the generations to come. They will be profoundly affected by cancer in their lifetime and the only way to stop it is to find a CURE!

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