Man couldn’t remember the right words, had speech problems
Last June, Bruce Lowder, 59, was struggling to find his words. He would say something like, “Look what you call it, you know what I mean,” when he wanted to watch TV, for example. Over the weekend, the situation got so bad that his wife, Meredith Lowder, made him a doctor’s appointment.
“It happened very quickly,” Meredith Lowder, 55, who lives in Putnam Valley, New York, said today. “He just had a really hard time remembering the words.”
The doctor recommended Bruce get an MRI and they soon realized why he had trouble speaking: he had glioblastoma, an aggressive cancerous brain tumor.
“Her principal (doctor) … said, ‘It’s a tumor and probably not a nice one,'” Meredith said. “That’s when the freezing cold feeling ran down my back.”
Speech problems lead to disheartening diagnosis
About six months earlier, in December 2020, Bruce had COVID-19, so when he started having speech issues, Meredith wondered if it was a lingering symptom of COVID-19. .
“He and my daughter had a tough time,” Meredith said.
The couple have been married for 20 years but have known each other since Meredith was 13 and Bruce, 16, when they attended the same schools. Meredith is a nurse practitioner and didn’t think Bruce had a stroke – he didn’t have any one-sided weakness or facial drooping. She was worried it was an aneurysm, so when the doctor told her it was stage 4 glioblastoma, she felt shocked.
“Honestly, that would have been the last thing on my list,” she said. “Glioblastomas are nasty.” John McCain, Ted Kennedy and Beau Biden all had glioblastoma which later led to their deaths, said Dr John Boockvar.
“It’s a malignant brain cancer. That means it comes from a cell in the brain and never really leaves the brain,” the vice president of neurosurgery and director of the Brain Tumor Center at Lenox Hill Hospital said today. “It stays in the brain, but it spreads throughout the brain and that’s what makes it universally deadly. So it’s an incurable brain cancer.
Bruce’s tumor was on the left side of his brain and in his speech center, which is why he had trouble finding his words. He understands everything people say. He just isn’t always able to find the exact words to answer. Doctors performed surgery and removed as much as they could. After some rehabilitation, he returned home and started radiation therapy with chemotherapy.
“It was very tough. The chemo not so much but the radiation was kind of unpleasant,” Meredith said. “There were times when I think he just wanted to fall asleep and not wake up.”
After completing his treatment in September, however, it appeared his health was improving.
“He was almost back to normal,” Meredith said. “He forgot a few things from time to time.”
But then her symptoms started to appear again and doctors recommended a second surgery.
“They found a few of these tumor cells,” Meredith said. “But not as much as one would expect given the aggressive nature of these types of tumors.”
Bruce also began having seizures and was no longer able to drive. The Lowders have two children, a son, Ben, 17, and a daughter, Abby, 19, and they wanted Bruce to spend as much time as possible with them. When a doctor suggested that clinical trials could help Bruce, the Lowders felt lucky to have access to it.
“If, when the time comes, we have to say goodbye to Bruce, we’ll have tried everything we possibly can try,” Meredith said.
Bruce hopes to go fishing with Ben one last time, which the two have been unable to do for two years due to the pandemic.
“It would be a wonderful opportunity for the boys,” Meredith said.
Clinical trials for possible treatments
Boockvar has conducted clinical trials to try to design better treatments for glioblastoma. Sometimes chemotherapy seems ineffective against brain cancer because it cannot cross the blood-brain barrier, which humans have to protect their brains from. He is therefore studying a way to circumvent it by using pericranial tissue, which is under the scalp but above the skull. It doesn’t have a blood-brain barrier, but it does have a blood supply. With this procedure, doctors remove the tumor and use the pericranial tissue in the cavity, hoping it will embed into the brain tissue. If successful, the chemotherapy could penetrate directly into the old site of the tumor in the brain.
“The (therapeutic) materials that were given orally or through a vein, chemotherapy, that would have a better chance of getting into that area of the brain,” Boockvar said.
Bruce is one of the first patients in the Stage 1 clinical trial to determine if the procedure can be performed safely.
“It’s safe,” Boockvar said. “(It’s) really important because one of the things that people were afraid of is that I put in the brain this highly vascular tissue and tumors like highly vascular things. So would the tumor grow faster by putting that flap of tissue in? And we can say unequivocally no, the tumor doesn’t.
The second clinical trial in which Bruce participated uses microcatheters – often used in coronary angiograms – to deliver a “huge dose of a drug effective against glioblastoma”.
“It’s like spraying insecticide on a lawn. You don’t want the insecticide getting into your house or your driveway,” Boockvar said. “This is an attempt to minimize the body’s exposure to this drug and maximize the exposure on a tumor.”
This trial has completed phase 2 studies and is recruiting for phase 3.
“We were able to show that a third of our patients live three years or more in a disease that has an average survival of 12 months,” Boockvar said.
“It can save someone’s life”
While the Lowders hope the clinical trials will give Bruce more time with his family and a better quality of life, they know his participation in the clinical trials could have more of an impact on other patients.
“It can save someone’s life. It can save a child’s life,” Meredith said. “Maybe our story will give someone else (hope) knowing that we are not alone, knowing that there are other people going through the same thing.”
Despite grueling treatments and various surgeries, Bruce, who will likely never regain his ability to remember words, never complains. It’s been almost a year since her diagnosis and the family knows their time is limited. They hope he will spend Father’s Day and be able to join Ben fishing and maybe a family trip to the Catskills.
“It was a challenge. I’m not going to lie. It certainly affected everyone. I have a very supportive family,” Meredith said. “The hardest part is that no one can go through grief except you.”