Patient heavily treated for rare disease finds resolve at LLU Cancer Center

Shilene Blain-Hearns suffered from Waldenstrom’s macroglobulinemia (WM), a rare blood cancer, for nearly two decades before turning her care over to Loma Linda University Cancer Center. There, an oncologist and pharmacist teamed up on a treatment to bring 60-year-old Blain-Hearns the long-awaited relief she was looking for, and eventually remission.

According to the American Cancer Society, only 3 out of 1 million people in the United States are diagnosed with WM within a year. The disease develops when abnormal white blood cells expand rapidly, displacing healthy blood cells in the bone marrow and producing a type of protein known as immunoglobulin M (IgM). Too much IgM impairs blood circulation and hampers the proper functions of body organs and tissues.

Since diagnosis in 2003, Blain-Hearns has worked with a variety of physicians and experienced seven iterations of cancer treatments and clinical trials. One previous treatment involved Blain-Hearns acquiring an Ommaya reservoir – a synthetic dome that was surgically placed under the scalp – to receive chemotherapy injections targeting cancer cells found in the cerebrospinal fluid around her spine and brain. Another time, Blain-Hearns’ son rushed her to a hospital where she stayed for 11 days after experiencing an episode of pleural effusion or fluid build-up around the lungs in response to chemotherapy pills.

A cancer center oncologist-haematologist, Mojtaba Akhtari, MD, said the rare blood cancer is already difficult to put into remission. In addition, he said, “Shilene has been through a lot, and all of these treatments can, in a way, make the cancer smarter.” Despite the rare disease and previous treatments, Blain-Hearns’ cancer symptoms have disappeared since they came to the Cancer Center.

We often talk about “ fighting ” cancer and how it’s a fight, but what I’ve come to realize over the years is that you can really live with cancer.Shilene Blain-Hearns

The bond she built with Akhtari was notable for past interactions with doctors, she said, because he “really listened” to each of her symptoms and treated them one at a time. After remedying her headache by ordering scans and administering chemotherapy through a spinal tap, Akhtari focused on the next concern.

“I trusted him, and it really felt like teamwork,” said Blain-Hearns, who felt comfortable asking Akhtari to make certain adjustments, such as a reduction in steroid dosage, during her treatment. “That was the first time I’d ever done that because I felt I could.”

Growing up in New York surrounded by family members, many of whom were medical professionals themselves, Blain-Hearns remembers being diagnosed with anemia – the condition she often refers to to explain her low energy levels as a child. It wasn’t until she moved to California, built a career as a postpartum nurse, and raised three children that she suspected something else was wrong. Since they planned to donate blood after hearing about a deficiency over the radio, the staff who took her blood advised Blain-Hearns to see a doctor about abnormal screening results as soon as possible.

The risk of WM is increased by factors such as male, white, 50 or older, and a hereditary lineage of the disease, making the chances of such a diagnosis for Blain-Hearns quite low. None of the criteria applied to her, a black woman who was 40 years old at the time of diagnosis, except for one – her father had lymphoma.

“My father died of lymphoma on the eve of his 51st birthday,” Blain-Hearns said. “I feel like I’ve been able to survive him for nine years because others have found a path for us through research and people who are willing to do clinical trials, and so I am willing to do those things and to help other people. help out.”

Indeed, research into the treatment of WM served as a crucial resource for Akhtari as he partnered with Kofi Donkor, PharmD, BCOP, an oncology pharmacist, to develop a treatment regimen for Blain-Hearns. Donkor first reviewed the treatment described in the study and then adapted the plan to briefly present the specific guidelines in a system called Beacon, which doctors and nurses have access to to appropriately deliver personalized treatments for individual patients .

“Because Shilene is someone who has had so many treatments in the past, this treatment, which was considered one of those last treatments, was complicated and demanding,” said Donkor, who built the plan from scratch in the Beacon system. . “Not every patient is the same or needs standardized treatment. We need to look at, listen to and treat the individual patient because of their specific concerns or conditions. “

Much to the delight of everyone, Blain-Hearns has responded to the treatment and put the cancer into remission. In addition to her work as a nurse, she is also tackling new goals: building energy by walking outside and limiting sources of stress by approaching life at her own pace.

“We often talk about ‘fighting’ cancer and how it is a fight, but what I’ve come to realize over the years is that you can really live with cancer,” Blain-Hearns said. “That’s the term I use for myself.”

She said she encouraged others to listen to their bodies and find doctors, such as Akhtari and Donkor, who instill trust and validate patients’ experiences by actively listening and treating the conditions accordingly.

Loma Linda University Cancer Center provides patients with comprehensive care that gives them the best chance of coping with cancer. Visit the website for more information on all the resources offered to cancer patients at the center.

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