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Louisville Doctor Finds Breakthrough Treatment for Rare Brain Disorder

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4.5 from 2 votes
Thursday, August 09, 2018

Louisville, Ky - People suffering from a rare and debilitating brain disorder from all over the world are looking to Kentucky for relief.

Doctors in Louisville and Lexington have helped a dozen patients recover with possibly the first effective treatment for radiation necrosis, which develops in up to 10 percent of patients after radiation therapy for problems including tumors or tangles of abnormal blood vessels in their brains.

In people with necrosis, brain tissue dies after radiation and releases a protein that causes brain swelling and irritation. The swelling and dead brain cells typically cause endless, crushing headaches, weakness and loss of speech, balance, memory and vision.

Sometimes necrosis spreads until it kills. Other times, medication dulls the necrosis but leaves victims haunted by health problems that keep them from fully functioning.

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Physicians try to keep the disease at bay with steroids to reduce swelling, but the drugs — if they work at all — cause side-effects such as weight gain, emotional instability, diabetes, increased risk of infection and weakened bones.

In a promising clinical trial in Texas about 10 years ago, doctors injected patients with the cancer drug Avastin. Still, patients suffered life-threatening complications like brain bleeding, blood clots in their legs and perforated intestines. And they would need to return for more injections because the drug would wear off.

Six years ago, Dashti was treating two unrelated preteens for necrosis after they received radiation therapy on tangles of blood vessels in their brains, a condition known as arteriovenous malformations.  

Steroids put 50 to 60 pounds on them. Headaches plagued their daily lives. They missed a lot of school and became withdrawn. One girl had seizures; the other was hospitalized for fluid overload. 

All conventional treatment failed. The girls were dying.

Dashti knew that Avastin could work but came with scary complications, based on the Texas trial. He also knew only tiny amounts of injected Avastin make it to the brain, with most of the expensive drug causing havoc as it coursed through the patient's system. He theorized that it would be more effective to break through the blood-brain barrier and inject a smaller dose directly into the brain.

Direct inject had never been tried before. Dashti called the experiment a "Hail Mary."

"It was a little bit nerve-wracking, trying it the first time on these two girls," he said. "But we were forced to because we didn't want them to die."

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The girls were treated several months apart, but the second was just as groundbreaking as the first.

The day after he injected the drug into an artery that goes directly to the brain, the girls' headaches were gone. Over several months their brains radically improved. The girls continued to get better over several years — now showing no evidence of radiation necrosis on their brain scans. They have had no relapse.

Dashti and colleague Tom Yao, a Norton neurosurgeon, along with Dr. Justin Fraser at the University of Kentucky, last year launched a clinical trial involving 10 people. All have improved.

Several years of much larger additional clinical trials lie ahead. The doctors will need to share their treatment method, so far done only in Louisville, with a range of doctors who could replicate their success before insurance companies accepted it as a mainstream therapy.

In the meantime, the first dozen patients are putting their lives back in order.

Alyssa Coffey, a 25-year-old New Jersey resident, spent about a year pushing through pressure headaches, double vision and flashing lights brought on by migraine auras. She often felt off-balance and nauseated. She lost her peripheral vision.

She developed necrosis after getting radiation therapy to treat a cluster of abnormal blood vessels discovered in her brain in 2016.

She was building her career in computer programming for the U.S. Navy and had big dreams. But she feared for her future.

Her doctors at home treated her with steroids but she put on 50 pounds in six months and fell deep into depression. She learned about the Kentucky trial through online support groups.

About a year after her treatment, she's nearly headache free. She doesn't think she'll ever get her peripheral vision back, she said, because of brain damage from the swelling, but she's otherwise returned to her normal life.

"I try not to go through life and get angry about little things. I'm happy that I'm here," she said in a phone interview.

Contact:
Caitlin McGlade
502-582-4144
cmcglade@gannett.com
Twitter: @caitmcglade

Author: Caitlin McGlade
Source: Louisville Courier Journal
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4.5 from 2 votes
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