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We Thought Our 3-year-old Had A Virus — It Was Stage 4 Cancer

The Boltons are trying to fundraise for a vaccine trial in New York.Jam Press/Help Our Ava/Facebook

The money is being raised to send Ava to Memorial Sloan Kettering Cancer Center in NYC, where a vaccine is being trialed to stop neuroblastoma from returning in cancer patients.

"Without this treatment, Ava is more likely to relapse reducing her chances of survival — this is something we are not willing to take a chance on," Natalie told Jam Press.

The couple also have a 5-year-old son, Lucas. The family planned to host a fundraiser Saturday night.

Chemotherapy Shortage Ends Treatment For High School Football Coach With Stage 4 Cancer

Jeff Bolle doesn't want to know how much time he has left. In late 2022, he was diagnosed with stage 4 bile duct cancer, which has a low long-term survival rate. Still, doctors felt hopeful that Bolle, who was very healthy prior to diagnosis, would respond well to treatment, which included surgery and six rounds of chemotherapy.

But when Bolle arrived at a chemotherapy session in May, he learned some worrisome news: The drug he receives, cisplatin, wasn't available. This meant his chemotherapy had to end after four rounds. Cisplatin is one of several chemotherapy drugs doctors are struggling to find because of a nationwide shortage.

While undergoing chemotherapy, Jeff Bolle returned to work as a high school guidance counselor. Sometimes he felt queasy and tired, but he also wanted to keep busy during the difficult treatments.Courtesy Jeff and Connie Bolle

"I made it to the last two or three treatments of it when they said, 'We don't have it,'" Bolle, 60, a guidance counselor and football coach in Milwaukee, tells TODAY.Com.

Bolle and his wife, Connie, are sharing their story to raise awareness of the shortage.

"I'm not sure what (other treatments) they might not be able to get before my situation gets worse," he says. "Hopefully they find the drugs they need for all the other cancer patients that are sitting in the infusion centers waiting for their treatments. I'm quietly optimistic."

Back pain leads to cancer diagnosis

In October 2022, Bolle began experiencing back pain. At first, he thought he pulled a muscle while exercising.

"He started to have some back pain, and he was like, 'Oh gosh, I must have lifted too much weight,'" Connie Bolle tells TODAY.Com. "He tried hot and cold treatments on it, and he took it easy. He stopped lifting the same amount of weight and (the pain) continued."

Jeff Bolle took over-the-counter medication, hoping for relief.

"I was taking my Tylenol at night just to be comfortable enough to sleep," Jeff Bolle says. "I realized that I just need to get this checked to know what it was." 

When Jeff Bolle first experienced back pain, he thought he pulled it exercising. He later learned he had stage 4 bile duct cancer, and the tumor was pressing against his back and causing him pain.Courtesy Jeff and Connie Bolle

He visited his primary care physician for a physical and underwent some blood tests. His bloodwork indicated his liver enzymes were elevated, and doctors performed an MRI, where they found a tumor the size of a grapefruit resting between his liver and kidney.

"(It) was pressing on his back and causing pain," Connie Bolle recalls. "They actually did a bunch of exams where they withdrew fluid and did further CT scans. … They ended up diagnosis it as bile duct cancer."

Doctors performed surgery to remove the tumor and two-thirds of his liver. After some recovery time, he started chemotherapy and immunotherapy. While he and Connie felt hopeful treatment would give him more time, they knew it wasn't guaranteed.

"My doctor said it was the type of cancerous growth you'll never really get into remission," he says. "Their thoughts were that they could get most of the tumor out and they could use chemo … to hold it off."

Bile duct cancer and chemotherapy shortage

Bile ducts are tubes that carry bile through the liver or from the liver and the gallbladder to the small intestine. Bile duct cancers are somewhat rare, accounting for about 50,000 annually in the United States, according to Dr. Antony Ruggeri, medical oncologist at Aurora St. Luke's Medical Center, who is the Bolles' doctor.

"It's not that common," Ruggeri tells TODAY.Com.

Symptoms of bile duct cancer include jaundice and abdominal pain in the right upper quadrant.

"If you look at yourself every day in the mirror, sometimes jaundice goes unnoticed because it creeps up on you," Ruggeri says. "People sometimes think, 'Oh it's just a little bit of change.' … They don't think much of it."

Because there are few symptoms, people with bile duct cancer often don't realize they're sick and might receive a delayed diagnosis.

"Sadly, we do often find these in stages where they're not surgically manageable," Ruggeri says. "They're either too big ... Or they've metastasized outside of the liver, and so they often are found late." 

Late-stage diagnoses for bile duct cancer can be devastating, as there aren't many good therapies that extend lives. Chemotherapy is the first line treatment, though sometimes cancers with a genetic component, such as Lynch syndrome, do have targeted treatments that work well, Ruggeri says. For many stage 4 patients like Jeff Bolle, chemotherapy is considered palliative and not curative.

"We can prolong their life with chemotherapy, but sadly chemotherapy is not that effective. It can have a modest improvement in how long your life is," Ruggeri says. "We have to rely just on chemotherapy and immunotherapy."

But now doctors like Ruggeri across the country are finding that the drugs they once used to cure or extend patients' lives are not readily available. Without chemotherapy, doctors can still give immune therapy, but by itself, the benefits for patients like Jeff Bolle are also "modest," Ruggeri says.

NBC News reported that 14 drugs used in cancer treatments are in short supply throughout the nation. These range from those used in leukemia and colorectal cancer to those that help with medical imaging. But the most "notable" shortages are the drugs carboplatin and cisplatin (which Jeff Bolle was taking) because they're often used for patients who can't be cured, Dr. William Dahut, chief scientific officer for the American Cancer Society, tells TODAY.Com.

On Monday, the U.S. Food and Drug Administration announced it's allowing imports of cisplatin from China to ease the shortage, and health care providers could begin ordering it Tuesday. The agency is looking into importing carboplatin, a spokesperson told NBC News.

The primary reason for the shortage is that there's little profit in making these drugs, FDA Commissioner Dr. Robert Califf told NBC News in May.

"A number of firms are going either out of business, or they're having quality problems because of difficulty investing in their technology. That's the core underlying reason for the shortage that we're seeing," Califf said.

One of the biggest makers of cisplatin and carboplatin, Intas Pharmaceuticals, has temporarily shut down production and it's not clear when it will resume, CNBC reported.

Intas Pharmaceuticals did not immediately respond to TODAY.Com's request for comment, but a spokesperson previously told NBC News in a statement that it's collaborating with the FDA to release more of its existing inventory of these products and is making a plan to resume manufacturing, but a final date hasn't been determined.

The limited production also comes at a time when the number of people who need the treatments is rising.

"(With) the aging population, which increases the number of folks with cancer over time, we see … a slow but increasing demand for these drugs," Dahut says, adding that if a manufacturing plant has a problem, there usually isn't anywhere else that can make up for this lack of production.

Even though Jeff Bolle stopped chemotherapy early because of the shortage, his health is stable. But he and wife, Connie, worry what will happen if the cancer begins growing again and there is still a cancer drug shortage.Courtesy Jeff and Connie Bolle

Dahut says that some patients will be able to use other treatments. But some of the hard-to-find medications are "really mainstays of upfront therapies."

"If we think about ovarian cancer, head, neck cancer, triple negative breast cancer, bladder cancer, testicular cancer, there are not necessarily good drugs you can swap out for (carboplatin and cisplatin)," he says.

While he can't be sure of how long the shortages might last, Dahut says it could take anywhere from four to six months before there's a steady supply of these medications. That can make a huge difference to some patients.

"Not having these drugs available for individual patients can have an impact on their overall survival," he says.

Speaking with NBC News, Califf said that the FDA is working with manufacturers to try to make these drugs more available. But he added that a long-term solution will need "intervention by Congress and the White House" to get the industry where it should be.

Dahut agrees that there ultimately needs to be "a different system." He doesn't have the answers, he says, but he believes there needs to be more of a manufacturing "safety net" than there is currently.

"The current way things are done are definitely going to leave this problem continuing in the future," he adds.

One more football season

When Jeff Bolle coaches football, he often runs onto the field to show the students a play. Summer training began already, and he realizes he won't be doing as much jogging.  

"I'm really active when I coach, and I show the drills, and I move around," he says. "I'll be standing around and giving a lot more verbal instructions instead of demonstrations, not running from one end of the field to the next. So that'll be the tough part, but hopefully it'll be good to be out there again."

The Bolles felt hesitant to share their story, but they know that there are other people who really need this chemotherapy.

"I hope I get it for myself, but we also need to try and get it for other people," Jeff Bolle says.

Connie Bolle agrees. The couple's been married for 28 years, and it's hard for her wondering if the shortage will impact their time together. She offers a plea to leaders to find a solution to the drug shortages.

"Give us more time and give him more time to coach football this fall. All those kids he impacts as a guidance counselor," she says. "So many people need him, not just me."

He Has Stage 4 Cancer With No Cure. His Treatment Ended Due To Chemo Shortage

Jeff Bolle doesn't want to know how much time he has left. In late 2022, he was diagnosed with stage 4 bile duct cancer, which has a low long-term survival rate. Still, doctors felt hopeful that Bolle, who was very healthy prior to diagnosis, would respond well to treatment, which included surgery and six rounds of chemotherapy.

But when Bolle arrived at a chemotherapy session in May, he learned some worrisome news: The drug he receives, cisplatin, wasn't available. This meant his chemotherapy had to end after four rounds. Cisplatin is one of several chemotherapy drugs doctors are struggling to find because of a nationwide shortage.

Jeff Bolle (Courtesy Jeff and Connie Bolle)

"I made it to the last two or three treatments of it when they said, 'We don't have it,'" Bolle, 60, a guidance counselor and football coach in Milwaukee, tells TODAY.Com.

Bolle and his wife, Connie, are sharing their story to raise awareness of the shortage.

"I'm not sure what (other treatments) they might not be able to get before my situation gets worse," he says. "Hopefully they find the drugs they need for all the other cancer patients that are sitting in the infusion centers waiting for their treatments. I'm quietly optimistic."

Back pain leads to cancer diagnosis

In October 2022, Bolle began experiencing back pain. At first, he thought he pulled a muscle while exercising.

"He started to have some back pain, and he was like, 'Oh gosh, I must have lifted too much weight,'" Connie Bolle tells TODAY.Com. "He tried hot and cold treatments on it, and he took it easy. He stopped lifting the same amount of weight and (the pain) continued."

Jeff Bolle took over-the-counter medication, hoping for relief.

"I was taking my Tylenol at night just to be comfortable enough to sleep," Jeff Bolle says. "I realized that I just need to get this checked to know what it was."

Jeff and his dog. (Courtesy Jeff and Connie Bolle)

He visited his primary care physician for a physical and underwent some blood tests. His bloodwork indicated his liver enzymes were elevated, and doctors performed an MRI, where they found a tumor the size of a grapefruit resting between his liver and kidney.

"(It) was pressing on his back and causing pain," Connie Bolle recalls. "They actually did a bunch of exams where they withdrew fluid and did further CT scans. … They ended up diagnosis it as bile duct cancer."

Doctors performed surgery to remove the tumor and two-thirds of his liver. After some recovery time, he started chemotherapy and immunotherapy. While he and Connie felt hopeful treatment would give him more time, they knew it wasn't guaranteed.

"My doctor said it was the type of cancerous growth you'll never really get into remission," he says. "Their thoughts were that they could get most of the tumor out and they could use chemo … to hold it off."

Bile duct cancer and chemotherapy shortage

Bile ducts are tubes that carry bile through the liver or from the liver and the gallbladder to the small intestine. Bile duct cancers are somewhat rare, accounting for about 50,000 annually in the United States, according to Dr. Antony Ruggeri, medical oncologist at Aurora St. Luke's Medical Center, who is the Bolles' doctor.

"It's not that common," Ruggeri tells TODAY.Com.

Symptoms of bile duct cancer include jaundice and abdominal pain in the right upper quadrant.

"If you look at yourself every day in the mirror, sometimes jaundice goes unnoticed because it creeps up on you," Ruggeri says. "People sometimes think, 'Oh it's just a little bit of change.' … They don't think much of it."

Because there are few symptoms, people with bile duct cancer often don't realize they're sick and might receive a delayed diagnosis.

"Sadly, we do often find these in stages where they're not surgically manageable," Ruggeri says. "They're either too big ... Or they've metastasized outside of the liver, and so they often are found late."

Late-stage diagnoses for bile duct cancer can be devastating, as there aren't many good therapies that extend lives. Chemotherapy is the first line treatment, though sometimes cancers with a genetic component, such as Lynch syndrome, do have targeted treatments that work well, Ruggeri says. For many stage 4 patients like Jeff Bolle, chemotherapy is considered palliative and not curative.

"We can prolong their life with chemotherapy, but sadly chemotherapy is not that effective. It can have a modest improvement in how long your life is," Ruggeri says. "We have to rely just on chemotherapy and immunotherapy."

But now doctors like Ruggeri across the country are finding that the drugs they once used to cure or extend patients' lives are not readily available. Without chemotherapy, doctors can still give immune therapy, but by itself, the benefits for patients like Jeff Bolle are also "modest," Ruggeri says.

NBC News reported that 14 drugs used in cancer treatments are in short supply throughout the nation. These range from those used in leukemia and colorectal cancer to those that help with medical imaging. But the most "notable" shortages are the drugs carboplatin and cisplatin (which Jeff Bolle was taking) because they're often used for patients who can't be cured, Dr. William Dahut, chief scientific officer for the American Cancer Society, tells TODAY.Com.

On Monday, the U.S. Food and Drug Administration announced it's allowing imports of cisplatin from China to ease the shortage, and health care providers could begin ordering it Tuesday. The agency is looking into importing carboplatin, a spokesperson told NBC News.

The primary reason for the shortage is that there's little profit in making these drugs, FDA Commissioner Dr. Robert Califf told NBC News in May.

"A number of firms are going either out of business, or they're having quality problems because of difficulty investing in their technology. That's the core underlying reason for the shortage that we're seeing," Califf said.

One of the biggest makers of cisplatin and carboplatin, Intas Pharmaceuticals, has temporarily shut down production and it's not clear when it will resume, CNBC reported.

Intas Pharmaceuticals did not immediately respond to TODAY.Com's request for comment, but a spokesperson previously told NBC News in a statement that it's collaborating with the FDA to release more of its existing inventory of these products and is making a plan to resume manufacturing, but a final date hasn't been determined.

The limited production also comes at a time when the number of people who need the treatments is rising.

"(With) the aging population, which increases the number of folks with cancer over time, we see … a slow but increasing demand for these drugs," Dahut says, adding that if a manufacturing plant has a problem, there usually isn't anywhere else that can make up for this lack of production.

Jeff and Connie Bolle. (Courtesy Jeff and Connie Bolle)

Dahut says that some patients will be able to use other treatments. But some of the hard-to-find medications are "really mainstays of upfront therapies."

"If we think about ovarian cancer, head, neck cancer, triple negative breast cancer, bladder cancer, testicular cancer, there are not necessarily good drugs you can swap out for (carboplatin and cisplatin)," he says.

While he can't be sure of how long the shortages might last, Dahut says it could take anywhere from four to six months before there's a steady supply of these medications. That can make a huge difference to some patients.

"Not having these drugs available for individual patients can have an impact on their overall survival," he says.

Speaking with NBC News, Califf said that the FDA is working with manufacturers to try to make these drugs more available. But he added that a long-term solution will need "intervention by Congress and the White House" to get the industry where it should be.

Dahut agrees that there ultimately needs to be "a different system." He doesn't have the answers, he says, but he believes there needs to be more of a manufacturing "safety net" than there is currently.

"The current way things are done are definitely going to leave this problem continuing in the future," he adds.

One more football season

When Jeff Bolle coaches football, he often runs onto the field to show the students a play. Summer training began already, and he realizes he won't be doing as much jogging.

"I'm really active when I coach, and I show the drills, and I move around," he says. "I'll be standing around and giving a lot more verbal instructions instead of demonstrations, not running from one end of the field to the next. So that'll be the tough part, but hopefully it'll be good to be out there again."

The Bolles felt hesitant to share their story, but they know that there are other people who really need this chemotherapy.

"I hope I get it for myself, but we also need to try and get it for other people," Jeff Bolle says.

Connie Bolle agrees. The couple's been married for 28 years, and it's hard for her wondering if the shortage will impact their time together. She offers a plea to leaders to find a solution to the drug shortages.

"Give us more time and give him more time to coach football this fall. All those kids he impacts as a guidance counselor," she says. "So many people need him, not just me."

This article was originally published on TODAY.Com

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