South Carolina’s neuro-oncologists expanding care options

With the only neuro-oncologists in the state, MUSC Hollings Cancer Center is at the forefront of brain and nerve tumor care in South Carolina.

That means access to clinical trials, doctors who are keenly aware of developments in the field and a focus on bringing high-quality care to people across the state.

Scott Lindhorst, M.D., and Alicia Zukas, M.D., shared some of the latest advances in their field.

Remote follow-up care

There are some procedures for which patients absolutely must travel to Charleston. But when it comes to regular check-ins, brain and nerve tumor patients can see their doctors remotely.

Hollings has offered this remote option for about a year. There are seven sites across South Carolina where personnel are trained to conduct neuro-oncology-specific exams while the neuro-oncologist monitors from Charleston.

“We can do really high-level care,” Zukas said. “I have multiple monitors, and I can see the patient on one, see their chart on another, see their imaging on another, and share everything with the patient and then the patient can share everything back to me.

“Even the stethoscope is directly hooked up to the telehealth cart.”

The quality is so good that in one instance, she was able to hear something concerning through the remote stethoscope and sent the patient directly to the local Emergency Department.

“I think our next hope is to expand it to clinical trials so that we can reach more people with clinical trials who live far away,” Zukas said.

Clinical trials for brain tumor care

Lindhorst and Zukas work to keep an active portfolio of clinical trials so that their patients have options, especially when it comes to glioblastoma.

“Glioblastoma has the toughest prognosis, the most aggressive biology of all of them, and so that's often where the clinical trial efforts will concentrate,” Lindhorst explained. “We have standard of care therapies, and they are standard of care because they have proven benefit. But especially in glioblastoma, they’re not nearly as good as we would like. So we're always looking for ways by which we can improve upon that standard of care therapy.”

For example, Hollings is the only South Carolina site in the worldwide GBM AGILE trial. This is an “adaptive clinical trial platform,” meaning that it’s designed to test multiple drugs at once. The trial “adapts” as results come in, sorting more patients to the most promising options. The trial design is meant to quicken the pace of drug development – especially important for a rare disease like glioblastoma, where it takes more time to enroll enough patients in the trial to get a statistically significant result.

Worldwide, 62 institutions are participating in the trial.

“It's a big consortium of places,” Lindhorst said. “The ultimate goal is an improvement upon the standard of care therapies for glioblastoma.”

Patients decide to participate in clinical trials for a variety of reasons, he noted.

“Patients’ motivations are often quite altruistic, and they just want to contribute to science," he said. "But really, there can be a totally worthwhile component for the patient on an individual basis, in that trial participation offers them the opportunity to gain access to novel therapies that we think have potential – admitting, transparently, that those therapies are not yet proven, but that patients otherwise would not have access to outside of a trial.”

Clinical trials and standard of care are both valid options, Zukas added.

“'Standard of care’ is just the best clinical trial results that we know of to date,” she said. “Both are good options.”

New option for neurofibromatosis

Lindhorst and Zukas are also excited to see a new drug option for people with plexiform neurofibromas, a type of tumor growth that can occur with the condition neurofibromatosis.

“It's the first time that there is a medication available for people affected by neurofibromatosis. The types of plexiform nerve tumors that they get are very painful and disabling, and we now have a pill,” Zukas said.

These are benign tumors, meaning they don’t invade other tissue the way that cancerous tumors do. But these growths can become quite large and visible to the naked eye. Because they grow along nerves, they can cause pain or numbness when pressing against a nerve or can cause problems when pressing against internal organs.

Until the new drug, mirdametinib, was approved in February, doctors could offer only pain medicine and some surgery, although plexiform neurofibromas are difficult to remove completely because they spread out, spider-like, rather than forming a single lump. Radiation therapy wasn’t usually an option, either.

“They are not very amenable to radiation. In fact, radiation in some circumstances might do more harm than good. So we needed a better medical therapy. Now we have at least one that has some proven benefit,” Lindhorst said.

Zukas estimated that about 3,000 people in South Carolina could potentially benefit from this new drug.

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