Shakisha Davis
Shakisha Davis is an active Tigerlily Foundation ANGEL Advocate that wants to highlight her experiences with the power of advocacy – especially when it comes to advocating for one’s own health. As a clinical trial participant in multiple studies, she’s had a variety of different experiences. Shakisha credits Tigerlily’s clinical trial education during the ANGEL Advocate training with making her feel confident about her understanding of clinical trials and her comfort level around trial participation.
Author: Katherine Cornish
The first trial Shakisha participated in started off smoothly – she highlights her study healthcare team members as being knowledgeable and helpful in getting her set up as a study participant. “I had a really good nurse navigator, I had a really good team,” she notes. The trial option was initially presented to her by her doctor as a different approach to radiation treatment, one that was more precise and more targeted, which sounded like a great opportunity that wouldn’t require much burden beyond her standard treatment plan. “It wasn’t going to be anything extra,” she says, “I didn’t have to do much, it was just about the way the radiation was administered, that was the only difference. I thought, ‘yeah, I could do this.’”“It was going fine, it was all good. And then it wasn’t.”
Shakisha Davis, Tigerlily Foundation ANGEL Advocate
With only three of the 36 radiation treatments in the study remaining, Shakisha began experiencing some discomfort. Throughout a day, it started off as an itching sensation, but by the end, grew into a seriously uncomfortable situation. She was losing her skin in the areas that were irradiated, right around the band of her bra, all of the way around the front and back. “My skin came off. It was burning. I could barely put on a shirt,” she says. She relayed her concerns about these serious side effects to her study team, but they continued to ask her to complete her series of treatments. “It was one of the only times I felt like a number,” she relayed, “they seemed more focused on getting me through the treatments than how I was actually doing… it was like they forgot about me as the patient.” With only three treatments remaining and the study team being so persistent, she thought “maybe I can do it, I can just finish the study, it’s only three more treatments.” But after seeing the burning and skin loss worsen after another treatment, Shakisha needed to advocate for herself and her own well-being. “I stopped just before the end. That was the best decision I could have made for myself, that was me advocating for myself.” As a trial participant, it’s important to remember that participation is entirely voluntary. And as a patient, there’s nobody that knows your experiences better than yourself, so it’s up to you – as a patient and as a participant – to make the choices that are the best for you.
After learning more about clinical trials through Tigerlily, Shakisha is an active supporter of clinical trial participation even in spite of her initial experience. “I know I made the right decision, but now I fully grasp how important it is to finish a trial. I do wish I could have finished those last two radiation treatments because my information could have been used for a greater cause,” she shares. While Shakisha still prioritizes self-advocacy, she has a better understanding of the needs of clinical research. Highlighting how learning more has helped her to move forward, she says “now I’ve begun to understand what the study team was doing, they knew that my information could help a lot of people. I think they just lost sight of things in the moment, but I understand why they wanted me to still finish the treatments.” “If I were offered a trial today, I would definitely consider it,” she says.
“I’m big on helping the next person. If it can help my family, my friends, or even people I don’t know, I’m all for it,” Shakisha says. She understands how important it is to participate in clinical research in order to design better treatments, understand medical conditions more deeply, and to help build a better future of healthcare for coming generations. She considers trial participation as “doing her part” for the future. Sharing her story “gives me purpose, it gives me a purpose to that pain, even those unpleasant parts,” she says. Shakisha encourages others to learn more and think about trial participation too.
“Do your research, learn about it. Clinical trials are not just a way to do tests on someone, it’s how they learn more about medicine. Know that it serves a greater purpose and that you’re a part of that impact, you helped bring forth new discoveries.”