More than 40,000 women are diagnosed with hepatocellular carcinoma (HCC) in the United States, according to the American Cancer Society. In 2001, 15-year-old Adrienne Wilson was one of them.
Unfortunately, by the time healthcare providers caught the disease, it was already stage IV, and Adrienne lived only 147 after her diagnosis. However, Adrienne’s sister, Andrea, turned the tragedy into a nationwide organization called Blue Faery: The Adrienne Wilson Liver Cancer Association to help others with the disease.
Blue Faery is also a member of the larger GI Cancers Alliance (GICA), which is an excellent resource for nurses to send their patients and caregivers to
“I started Blue Faery about a year and a half after she passed away because at that time there were no other organizations in the United States doing anything specifically for HCC patients and caregivers,” Andrea said in an interview with Oncology Nursing News. “I knew the rate of liver cancer was going to rise in this country and I didn’t want anyone else to go through what we did.”
Blue Faery focuses on research, education, and advocacy with the hopes of finding a cure for patients with HCC, while also improving the quality of life for patients and their caregivers.
They recently created an online forum, the Blue Faery Liver Cancer Community, which is a private, HIPAA-compliant community where patients and caregivers can find support. The groups is moderated by two people who “get it” – one woman who lost her husband to HCC and another who lost her father to HCC.
On the research end of things, Andrea mentioned that there is a ton of exciting research that came out of the 2019 American Society of Clinical Oncology (ASCO) Annual Meeting.
“Out of this particular meeting, there are just so many more drugs now in the liver cancer space in the past 2 years than there were even 3 years ago, especially for patients with advanced-stage cancer,” she said. “Liver cancer is very tricky because our liver doesn’t have any pain receptors, so typically people don’t feel pain until later stages. In the past, there was very little anyone could do, but now there are about 7 drugs that are approved for late-stage patients.”
Looking ahead, Andrea said that personalized medicine will be the next frontier in the HCC space.
“I think the future for liver cancer, and for most solid tumor cancers, is going to be precision medicine. It’s going to be getting the genomic makeup of that person and finding out exactly what their individual tumor will respond to,” she said.
A version of this article was originally published on curetoday.com as, “New Online Resources Provide Support to the Liver Cancer Community.”