Lynn lives an active lifestyle as an owner of her own luxury traveling tours business. But when she got back from a corporate cruise in November of 2023, she started to feel sick every day.

Lynn was quick to dismiss her feelings of unwellness and weight loss, assuming that her new diet was to blame. Then she started to notice problems with her memory. In February of 2024, she was out shopping with her granddaughter when she started struggling with her speech. “She kept telling me she couldn’t understand what I was saying,” said Lynn. “I couldn’t talk. I called my husband and he came straight to where I was and took me to UNC Rex in Raleigh.”

Lynn’s husband thought she had had a stroke, and she was immediately rushed back when they reached the emergency room at UNC Rex. Within two and a half hours on February 19, 2024, they were told that she had a large brain tumor.

Lynn stayed in the hospital at UNC Rex and had the tumor removed by neurosurgeon Dr. Sivakumar Jaikumar. When she was discharged, she was referred to division chief of neuro oncology, Dr. Soma Sengupta, at UNC Health Chapel Hill for treatment.

A bad case of food poisoning prevented Lynn’s husband from accompanying her to her first appointment at UNC Health in Chapel Hill. Thankfully, Lynn met nurse navigation Ann Dixon at her first appointment. “Had it not been for meeting Ann that first day, it would not have been as positive,” said Lynn.

Dr. Sengupta informed Lynn about ongoing glioblastoma clinical trials at UNC Health. Lynn felt overwhelmed by her diagnosis, the clinical trials, and the absence of her husband during her appointment, and decided to decline participating in any of the clinical trials and move forward with standard of care treatment. “Dr. Sengupta was wonderful,” said Lynn. “She let me tell my story and she was kind enough to let me have my treatment in Rocky Mount.”

The standard of care for glioblastoma patients after resection surgery includes chemotherapy and radiation, which Lynn was able to do at UNC Health Nash in Rocky Mount. She traveled to Italy in between treatments to lead two of her group tours. After she returned to continue treatment, her headaches returned. Worried, Lynn reached out to Dr. Sengupta. “Dr. Sengupta was going out of town, so she set me up with Dr. Higgins and Dr. Rauf,” said Lynn.

Neurosurgical oncologist Dr. Dominique Higgins and neuro oncologist Dr. Yasmeen Rauf met with Lynn to explain that MRI imaging confirmed her tumor was growing, and the standard of care treatment was not working. She would have to undergo another resection surgery.

Still a candidate for the clinical trials, Dr. Higgins and Dr. Rauf provided Lynn with a detailed document outlining the ongoing glioblastoma clinical trials at UNC Health and spoke with her at length about each trial. After spending time reading about the clinical trials, Lynn decided to enroll in the SONOBIRD phase III clinical trial for patients with glioblastoma. The trial is led by Dr. Higgins. “Dr. Higgins was very honest and I understood what he was saying,” said Lynn. “I asked him point blank questions that he answered very honestly. He gave me his card, and told me if I needed anything to contact him.”

For this clinical trial, following her tumor resection, Lynn takes a dose of the medication once every six weeks, and she will have an MRI and bloodwork in between doses to monitor tumor growth. “There are so many trials out there and with the type of GBM I’ve got, this is the best option,” said Lynn.

On September 11, 2024, she went in for her second surgery performed by Dr. Higgins at UNC Health in Chapel Hill. During the surgery, Dr. Higgins was able to perform a maximal safe resection of the new tumor growth from around critical nerves and blood vessels. “Lynn’s journey highlights the quality and collaborative care provided at UNC,” said Dr. Higgins. “We are excited to be the first center in the US to offer this clinical trial, and the only site in North Carolina, which allows us to provide these cutting-edge options for our patients.”

In addition to her treatment at UNC Health, Lynn also participates in integrative oncology group visits led by Dr. Sengupta. The virtual visits provide brain tumor patients with information on important topics, such as nutrition and exercise, that can benefit patients with brain tumors. Dr. Susan Gaylord, Amanda Corbett Pharm D, Denise Spector NP, and Aisha Chilcoat ND, all provide their expertise in this integrative oncology virtual group visit series. “Dr. Sengupta’s collaborative group has been unbelievably positive,” said Lynn.

Lynn shared that she has made a conscious effort to incorporate mindfulness and positivity into her life through healthy diet, yoga, meditation, and by masking in public spaces when she needs to go out to prevent illness. “This has been very, very difficult,” said Lynn. “But trying to put positivity in has made a difference.”

If you are interested in participating in a brain tumor clinical trial at UNC Health, please contact our neuro-oncology clinical research coordinator Camisha Johnson, at Camisha_Johnson@med.unc.edu or call her at (919)-445-4847 to discuss potential enrollment.

 

Written by Makenzie Hardy, Marketing Coordinator, UNC Health Department of Neurosurgery