Being proactive helps Krysti beat the odds of inflammatory breast cancer
The longer I’m on this cancer journey, the more I’ve learned how important it is to be an informed, proactive patient. Thank God I’ve met so many inspiring people who have helped pave the path for me. My friend Krysti Hughett is living proof of the power of doing your research and advocating for yourself. She has shared so much valuable information with me about clinical trials and cancer freebies like Camp Kesem, a free overnight camp for kids whose parents have/had cancer (our daughters have been cabin mates for seven summers now). So I was thrilled when she agreed to share her amazing story in my book, Miracle Survivors: Beating the Odds of Incurable Cancer.
In 2004 at age 44, Krysti Hughett learned she had inflammatory breast cancer (IBC), a rare and very aggressive form of the disease that manifests itself in a rash, rather than a tumor. Days later, scans showed it had spread to her lungs, which meant it was stage IV and incurable. At the time, little was known about inflammatory breast cancer, but Krysti set out to change that. She sent an email that was circulated to every parent at her daughter’s school, which culminated in an entry in Snopes.com about IBC.
No one thought Krysti would live very long, but despite many obstacles (including 12 total brain tumors), Krysti is alive to tell her story. Part of the reason, I believe, is that Krysti is willing to do whatever else it takes to find groundbreaking treatments.
“I met some people from the National Cancer Institute when I was in advocacy training sponsored by the National Breast Cancer Coalition. That led me to the trial at Vanderbilt in Nashville – a targeted therapy called a PI3 Kinase Inhibitor. PI3 Kinase is a major growth pathway for many cancers. I traveled five hours each way weekly for the trial– close to 100,000 miles. My brother-in-law pointed out that he could have circled the globe three times for all my driving from Indianapolis to Nashville. But it was worth it for me and my family,” Krysti shares in my book.
Krysti was on the trial for over three years until it stopped working. Her results were so outstanding a researcher from Johns Hopkins is going to run the breast cancer genome from blood DNA to find out why she survived so long and did so well on the trial.
I consider Krysti a mentor, and I’ve followed her wisdom when seeking information about my clinical trial I’ve mentioned in previous posts.
“I’m someone who, if I don’t know something, I will learn about it. I’m going to direct my treatment; along with my doctor,” Krysti explains.
I couldn’t agree more.
Live in or near Indy? Krysti and I will be speaking and signing copies of Miracle Survivors on Sunday, November 30, 2 to 3 p.m. at Indy Reads Books, 911 Massachusetts Ave., Indianapolis, IN. The event is free and open to the public. Light refreshments will be served. Hope to meet some of you there!