SEATTLE, Wash. — Steve DeAngelo was home in Washington during Christmas Eve when the familiar twitching in his left foot began.

It had been nearly six months since the last episode, and with family all gathered for the holidays the timing couldn’t have been much worse.

“Everything is so tight when it’s spasming that it hurts,” said DeAngelo. “You really, really want to try and stretch your arm out or your leg out like you would with a cramp, but you just can’t. You have no control of what’s happening.”

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What felt like 20 minutes of convulsing on the floor was in reality about a 90-second seizure, something DeAngelo suffers from every few months as a result of a tumor on the right side of his brain. He has been fighting cancer in his brain, esophagus, liver and lungs since 2019, and now has hope that an experimental drug, which his insurance has denied coverage for, can save his life.

“If the drug does work, I’m on it indefinitely,” said DeAngelo, 44. “It’s good and bad. I get to stay alive, but I’m going to put my family in the poor house.”

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The cost of the drug tucatinib each month is more than $25,000. Tucatinib, according to the National Cancer Institute, is used to treat certain types of breast and colorectal cancers, and is being studied in the treatment of other types of cancer.

Cancer discovery

At age 10, DeAngelo and his family moved to Truckee from Southern California.

Like many youngsters growing up in the area, he participated in sports, and then later joined band in high school, playing the electric bass.

Upon graduating from Truckee High School, DeAngelo enlisted in the Army. After his time serving in the military, he returned to Truckee where he worked at The Rock Garden.

DeAngelo then met his wife Melissa. The two connected online before the popularity of dating apps, finding each other on the now defunct Yahoo! Personals.

“I signed up for a free trial,” said Melissa, who had just moved from Chicago, Illinois to Reno. “I saw that he looked at my profile but he didn’t say anything, so I messaged him. We just started talking and were kind of inseparable after that.”

The two began dating, and later settled down in Washington where they now are raising two sons ages 7 and 10.

In 2019, however, the family’s lives were upended when Steve began having an issue with his throat and swallowing food.

“I would try to eat and it just felt like food would get stuck in my throat and I couldn’t swallow it,” he said.

Steve went to his doctor, but due to his age symptoms were ignored and he was instead given a new dietary plan. After a couple months went by the issue continued to persist.

“I didn’t see any improvements,” said Melissa. “Finally, I was like, ‘You need to go see a different doctor.’

A trip to a gastroenterologist and a camera down his throat immediately revealed a tumor in his esophagus. Further tests revealed cancer had spread to his liver and lungs.

“Since it was found in multiple spots, they immediately stage you at Stage 4,” said Steve on the diagnosis. “It was definitely pretty surprising. There’s no history of cancer in my family.”

Rounds of chemotherapy have helped alleviate the symptoms in his throat allowing him to be able to eat again. Multiple radiation treatments have followed along with more chemotherapy treatments every few weeks.

“It was the worst news that you could imagine hearing,” said Melissa. “That you thought you had this life ahead of you with your partner and it’s just completely ripped out from underneath you and you have to reimagine everything, especially with kids and what their futures are going to be like.”

Doctors at the time of his diagnosis told Steve he’d have roughly 12 to 18 months to live. Nearly four years later he continues to fight.

“It’s an ongoing process, but I’ve made it farther than expected,” he said.

Seizure scares

In January 2022, Melissa noticed Steve was having difficulty walking and controlling the muscles in his left leg.

Steve already had a doctor’s visit scheduled that day, and so a brain CT scan was ordered in addition to his usual treatments. The scan revealed more bad news for the family — a cancerous spot on the right side of his brain. Soon after, he would have the first of multiple surgeries to try and remove the tumor.

About six months later and a day after celebrating their 13-year wedding anniversary, Melissa found Steve on their kitchen floor violently convulsing.

The couple’s terrified sons were ushered into the living room, while Melissa called 911.

“That was one of the scariest moments of my life,” said Melissa. “I thought he was going to die.”

 She’d later write on Steve’s online blog at http://www.caringbridge.org, that while on the phone with the 911 dispatcher her oldest son was yelling out, “No, Daddy, don’t leave me. I need you.”

Mounting bills

Since Steve’s seizures began, he’s had episodes every few months, resulting in the loss of his ability to safely drive a car.

“I can feel it in my leg,” said Steve on what a oncoming seizure feels like. “So, what I’ll do is prep myself in a safe position. I just lay on the floor and let my body do its thing, and then it eventually kind of calms down.”

The brain tumor has become the biggest issue facing Steve. He’s been hurt during falls caused by seizures, including breaking his shoulder and hitting his head. Steve’s also now had multiple brain surgeries, and isn’t able to fully walk or have full control of his left arm.

His biggest supporter remains Melissa, who has since become more or less a cancer expert. Through her own research she stumbled upon tucatinib, the experimental drug he’s currently taking.

“She could be part of my medical care team,” said Steve. “When we started to realize the third line of treatment wasn’t getting what we need done, she started looking up all these clinical trials.”

The family’s insurance has denied the use of the tucatinib due to it not being approved for that specific cancer and specific regimen. Melissa said the family has appealed to the insurance company, leveraging support of their doctors but to no avail.

“We have doctors, who are experts in their field, more than one, saying this is his only and best option right now,” she said.

The drug manufacturers also denied applications for compassionate use of tucatinib based on the family’s income, leaving the DeAngelo’s in a financial hole.

On top of chemotherapy and other medications, Steve has now been on the drug, which consists of taking four pills every day, for a little more than a month.

“He’s a fighter,” said Melissa. “The treatment is really rough and it is not uncommon for people to say my body can’t handle this anymore, I can’t keep living like this, the quality of life is too bad for me to continue doing these treatments, and so they make the decision to stop treatment. Steve’s not doing that. He wants to fight. He wants to be here for us. He wants to be here for our boys.”

Melissa recently posted a $25,901.20 receipt for the first treatment of tucatinib. Price for the drug jumped to $28,226.80 for the second treatment — a nearly 9% price increase.

“My hope is that the new pills will shrink the tumor, and we’ll see some sort of results,” said Steve. “I’m hoping we get some other reaction than what we’ve currently been getting.”

The DeAngelo family is currently seeking help with the cost of the drug. They have a GoFundMe campaign http://www.gofundme.com/f/help-save-steve-deangelos-life.