October 31, 2019
In her decades serving and advocating for Latinos and other communities of color in the Kansas City area, CiCi Rojas has worked tirelessly. She has held roles as CEO and president of the Hispanic Chamber of Commerce of Greater Kansas City, vice president of community engagement for a downtown hospital and president and CEO of Central Exchange. Then she became partner and president in a new venture to create a bilingual engagement platform for professional sports teams, including the Kansas City Chiefs.
So, when she found herself tired all the time in early 2017, she thought she had a pretty clear handle on why.
“I chalked up being tired and fatigued to the normal course of being a busy, professional woman,” CiCi says. “We had just won a West Coast client, and I was flying back and forth. It was the football postseason, and we had little time to prepare for the upcoming season. I was active and burning the candle at both ends, so, yes, I was tired.”
But by July, CiCi was noticing bruises that seemed to come out of nowhere, and she was experiencing night sweats. Then she discovered a lump in her abdomen.
“That’s when I knew it was serious,” she says.
Seeking the right care
CiCi immediately made an appointment with her doctor and was quickly diagnosed with lymphoma. She began chemotherapy, a treatment she knew could be difficult, but that brought intense symptoms she never expected.
“It was a shock to the system, to say the least,” she says. “I had terrible, debilitating nausea. I could keep nothing down. I wasn’t mobile. I was hospitalized for 10 days and lost 30 pounds.”
While her care team was working hard for her, “they were baffled about what was going on with me. I demanded a transfer to The University of Kansas Cancer Center. I knew its reputation, and I knew it was a National Cancer Institute-designated cancer center. That was where I needed to be, and I advocated for myself until I got there.”
Within 36 hours, CiCi was moved to the cancer center. Experts there determined she had an intestinal infection entirely unrelated to the lymphoma or chemotherapy. Correctly diagnosed, she received the necessary treatment for the infection before continuing chemotherapy. After 6 rounds of chemo, her cancer went into remission.
“That was the first time The University of Kansas Cancer Center saved my life,” she says.
Remission to relapse to remission
CiCi gradually built up her strength and returned to her daily life, including physical workouts as well as a focus on emotional and spiritual healing, she says.
Her business continued to grow, and she won additional sports clients. But in April 2018, while traveling to the NFL draft in Texas, she discovered a lump in her neck.
“I thought, ‘Oh, crap. It’s back,’” she says. She returned to her cancer care team immediately.
Though disheartened by the cancer’s return, CiCi received encouraging news.
“The cancer was isolated and at an earlier stage than my first diagnosis,” she says. “And I qualified for a clinical trial in CAR T-cell therapy.”
CAR T-cell therapy is a developing breakthrough in precision cancer therapy. Some CAR T-cell treatment is now FDA approved, while some treatments are still in clinical trials. The patient’s T cells – crucial to the proper function of the immune system – are extracted from the patient’s body, re-engineered in a laboratory to detect cancer cells, and returned to the body supercharged to seek and destroy cancer.
CiCi became a participant in a clinical trial of investigational CAR T-cell treatment. Clinical trials are different from standard medical care. As with all research studies, clinical trial participant outcomes vary. Before participating in a clinical trial, it is important to discuss the risks and benefits with a healthcare provider.
“CiCi had a particularly high-risk case of lymphoma,” says blood and marrow transplantation specialist Siddhartha Ganguly, MD, CiCi’s doctor at The University of Kansas Cancer Center. “There was no standard of care that would be satisfactory to her long-term outcome. The CAR T-cell therapy trial offered hope in the face of a difficult diagnosis.”
“This was an exciting opportunity,” CiCi says. “There was never any doubt in my mind about participating. It was a new trial that could help me, help others and help science. I was all in.”
CAR T-cell treatment is provided by experts of the cancer center’s blood and marrow transplant and cellular therapeutics program, which has performed more than 3,600 stem cell transplants since its inception in 1977. It is one of the nation’s most experienced programs.
“Our cancer center is at the forefront of progress in CAR T-cell therapy,” Dr. Ganguly says. “We have been leaders in participant enrollment in clinical trials and now are among few centers in the nation also offering FDA-approved CAR T-cell therapy. It is a living drug. CiCi’s own cells were altered to recognize and fight cancer, to behave like Pac-Man.”
CiCi received her CAR T cells as part of a clinical trial in July 2018. After the expected hospital stay, in which she felt like she had an intense case of the flu, her new cells did their work. She achieved another remission. Her doctors will monitor her closely in the years to come.
“The care this team provides is incredible,” CiCi says. “Everyone is so encouraging and supportive. This was serious, and we took it seriously, but the attitude was always, ‘We’re gonna beat this!’ And we did.”
Life is good
Today, CiCi is feeling well, building her strength and immune system. Dr. Ganguly emphasizes that he and the cancer care team strive not only to treat disease, but also to recover quality of life, returning patients to the activity and lifestyle they enjoy.
“I try to be as productive as possible, but I have a new normal,” CiCi says. “I know I need my rest. I try to limit my travel and take direct flights to control my environment a bit. Life is a little different, but it is good, and I am grateful. The team at the cancer center saved me twice.”
“She is a miracle of medical science,” adds Dr. Ganguly. “This technology is new, but exciting. We’re hopeful it will keep her healthy for many, many years to come.”
This individual participated in a clinical trial of an investigational treatment. Clinical trials are different from standard medical care. As with all research studies, clinical trial participant outcomes vary. Before participating in a clinical trial, it is important to discuss the risks and benefits with your healthcare provider.
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