Jeff Bolle isn’t interested in knowing how much time he has left. He was diagnosed with stage 4 bile duct cancer in late 2022, which has a dismal long-term survival prognosis. Despite this, physicians were optimistic that Bolle, who had been in good health prior to the diagnosis, would react well to treatment, which involved surgery and six rounds of chemotherapy.
However, when Bolle came to a chemotherapy appointment in May, he discovered some concerning news: the medicine he usually takes, cisplatin, was not available. This meant that his chemotherapy had to come to a halt after four cycles. Cisplatin is one of numerous chemotherapy medications that physicians are having difficulty obtaining due to a statewide scarcity.
He made it to the last two or three treatments of it when they said, ‘they don’t have it,’ Bolle, 60, a Milwaukee guidance counselor and football coach, tells.
Bolle and his wife, Connie, are sharing their experience to bring attention to the scarcity.
He adds that he is not sure what other treatments they might not be able to get before his condition gets worse. He hopes they find the drugs they need for all the other cancer patients who are waiting for treatments in infusion centers. He is cautiously optimistic.
Bolle started feeling back discomfort in October 2022. He first believed he had injured a muscle while exercising.
He started having some back pain, and he was like, ‘Oh my gosh, I must have lifted too much weight,’ Connie Bolle says. He tried hot and cold treatments on it, and he was gentle with it. He stopped lifting the same weight, and the discomfort persisted.
Jeff Bolle used over-the-counter medicine in the hopes of finding relief.
Jeff Bolle explains that he was taking his Tylenol at night just to be comfortable enough to sleep. He knew he just needed to have this checked to find out what it was.
He went to his primary care physician for a checkup and some blood tests. His liver enzymes were increased in his bloodwork, so physicians did an MRI, which revealed a grapefruit-sized tumor between his liver and kidney.
It was pressing on his back and causing pain, recounts Connie Bolle. They actually performed a number of exams in which they drew fluid and performed additional CT scans. They finally diagnosed it as bile duct carcinoma.
During surgery, doctors removed the tumor as well as two-thirds of his liver. After some rest, he began chemotherapy and immunotherapy. While he and Connie hoped that therapy might extend his life, they understood it wasn’t assured.
He adds that his doctor said it was the type of cancerous growth where one’ll never really get into remission. Their thinking was that they could get most of the tumor out and then use chemo to keep it at bay.
Bile ducts are tubes that transport bile from the liver to the small intestine or from the liver and gallbladder to the small intestine. According to Dr. Antony Ruggeri, medical oncologist at Aurora St. Luke’s Medical Center and the Bolles’ doctor, bile duct malignancies are quite uncommon, accounting for around 50,000 cases each year in the United States.
It’s not that common, says Ruggeri.
Jaundice and stomach discomfort in the right upper quadrant are symptoms of bile duct cancer.
If one looks in the mirror every day, jaundice can go unnoticed as it creeps up on one, Ruggeri adds. Occasionally individuals think, ‘Oh, it’s only a little bit of change.’ They don’t give it much thought.
Since there are minimal symptoms, patients with bile duct cancer may go unnoticed and have a delayed diagnosis.
Unfortunately, they frequently find these in stages that are not surgically manageable, Ruggeri explains. They’re either too large or they’ve metastasized outside of the liver, so they’re frequently discovered late.
Late-stage bile duct cancer diagnosis may be disappointing, since there are few effective options for extending life. Chemotherapy is the first-line treatment, although targeted medicines for malignancies with a hereditary component, such as Lynch syndrome, do exist, according to Ruggeri. Chemotherapy is regarded as palliative rather than curative for many stage 4 patients, including Jeff Bolle.
They can prolong their lives with chemotherapy, but it is not very successful. It may improve one’s life expectancy slightly, Ruggeri adds. They must rely solely on chemotherapy and immunotherapy.
However, physicians throughout the nation are discovering that the treatments they formerly used to heal or lengthen the lives of their patients are no longer widely accessible. Doctors may still provide immune treatment in the absence of chemotherapy, but the advantages for patients like Jeff Bolle are “modest,” according to Ruggeri.
14 cancer-treatment medications are in low supply throughout the country. These include those utilized in leukemia and colorectal cancer, as well as those that aid in medical imaging. The medications carboplatin and cisplatin (which Jeff Bolle was receiving) have the most “notable” shortages since they’re often used for patients who can’t be cured, according to Dr. William Dahut, chief scientific officer for the American Cancer Society.
The US Food and Drug Administration stated on Monday that it would allow cisplatin imports from China to alleviate the shortfall, and health care providers may begin purchasing it as early as Tuesday. The FDA is considering importing carboplatin.
According to FDA Commissioner Dr. Robert Califf, the fundamental reason for the scarcity is that producing these medications is not profitable.
A number of firms are going out of business or experiencing quality issues as a result of difficulties investing in their technology. That is the root cause of the current scarcity, according to Califf.
Intas Pharmaceuticals, one of the largest producers of cisplatin and carboplatin, has temporarily halted manufacturing, and it is unclear when it will return.
Intas Pharmaceuticals’ spokesperson previously said in a statement that the company is collaborating with the FDA to release more of its existing inventory of these products and is planning to resume manufacturing, though no firm date has been set.
The restricted output also coincides with an increase in the number of people in need of the therapies.
With the aging population, which increases the number of people with cancer over time, one sees a slow but increasing demand for these drugs, Dahut says, adding that if a manufacturing unit has a problem, there is typically nowhere else that can make up for the loss of output.
According to Dahut, some patients will be able to adopt alternative therapies. However, some of the difficult-to-find drugs are truly mainstays of upfront therapies.
When it comes to ovarian cancer, head and neck cancer, triple negative breast cancer, bladder cancer, and testicular cancer, there aren’t always good drugs one can switch out for (carboplatin and cisplatin), he adds.
While he cannot predict how long the shortages will remain, Dahut believes it will take four to six months until there is a consistent supply of these drugs. This may have a significant impact on some people.
Not having these drugs accessible to individual patients can have a negative impact on their overall survival, he adds.
Califf told that the FDA is working with manufacturers to make these medications more widely accessible. However, he said that a long-term solution would need intervention by Congress and the White House to get the business back on track.
Dahut agreed that there must eventually be a different system. He doesn’t have all the solutions, but he feels there should be more of a manufacturing “safety net” than there is now.
The current way things are done will almost certainly leave this problem persisting in the future, he says.
When Jeff Bolle instructs football, he often goes onto the field to demonstrate a play to the pupils. Summer training has already begun, and he understands he won’t be jogging as much.
When he coaches, he is very active, and he shows the drills and moves around, he explains. Rather than running from one end of the field to the other, he’ll be standing around and giving a lot more verbal instructions. So that’ll be the difficult part, but hopefully it’ll be fantastic to be back out there.
The Bolles were reluctant to tell their tale, but they knew that other individuals were in desperate need of treatment.
He hopes he gets it for himself, but they also need to try and get it for other people, Jeff Bolle adds.
Connie Bolle concurs. The pair has been married for 28 years, and she is worried about how the scarcity may affect their time together. She asks leaders to find a solution to the medicine shortages.
She adds that give them more time and give him more time this fall to coach football. All those children he influences as a guidance counselor. So many individuals need him, not just him.
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