Melanoma Survivor Finds Hope Through Immunotherapy

Written By:Stacy Simon

When Bryant Wieneke started feeling “funky” in April 2016, he figured it was just part of getting older. At age 64, he enjoyed an active lifestyle with his wife, Elvira – especially bicycling. He had just a few mild complaints including a pain in his side, some queasiness, a little trouble with his bowels, and a lump under his arm he thought was from a torn rotator cuff. But a visit to the doctor told him otherwise.

A urine test revealed abnormal cells, which led to more testing and eventually, a diagnosis of advanced melanoma skin cancer. The cancer had spread to Wieneke’s lymph nodes, kidney, liver, lungs, pancreas, colon, spine, and brain. He and Elvira were not prepared for the news.

Wieneke says, “It was just horrendous. It was unbelievable. My wife and I were both devastated as were my sons and friends. It was just hard to believe. It’s a paradigm shift. It’s a whole new reality that you’re suddenly faced with. We thought this was a death sentence, really. We didn’t know what to do.”

A promising treatment

When you go into this you have no experience in this world. Real hope emerged when we were prescribed and then approved by our insurance company for the immunotherapy treatment.

Bryant Wieneke

Wieneke began researching melanoma treatments online and learned about the immunotherapy drugs Yervoy (ipilimumab) and Opdivo (nivolumab). Both drugs help the body’s immune system fight cancer by blocking certain proteins on immune cells called T cells. These proteins normally keep the immune system from attacking other cells in the body. Blocking the proteins can sometimes shrink tumors and help people with melanoma and some other types of cancer live longer.

But Wieneke had no idea whether this treatment was right for him, or whether he’d be able to get it.  “We focused on the immunotherapy as hope, but when you go into this you have no experience in this world and we didn’t know what the chances were that we could get it,” said Wieneke. His oncologist referred him to a melanoma specialist, and both agreed Wieneke would benefit from the immunotherapy drugs he had read about. Now he just needed the insurance company to approve it.

“That was harrowing because we wanted things to happen so quickly and things just don’t happen quickly in the medical establishment,” said Wieneke. “Real hope emerged when we were prescribed and then approved by our insurance company for the immunotherapy treatment.”

Meanwhile, Wieneke visited specialists to look for the spot on his skin where the melanoma started. Removing that skin tumor through surgery is usually a main treatment for people with melanoma. But in Wieneke’s case, doctors couldn’t find the tumor. On the one hand, Wieneke admits the not-knowing drives him crazy. But he says he has to let that go in order to concentrate on getting better.

“That sort of question and the unknowable parts of it we had to sweep away. Elvira and I had to take what we knew and make a plan. We needed some structure to fight this and we got that when we got the approval for the immunotherapy.”

Ups and downs

Wieneke received his first of 4 combination Yervoy and Opdivo treatments in June, 2016 and was overjoyed with his progress early on. After the first 2 treatments, the tumors he could see – the ones under his arm and on his spine –  almost disappeared. His only side effect was an itchy rash. His doctor agreed the signs were good, but cautioned they’d need scans to find out whether the tumors had shrunk in the internal organs. “Hope is a wonderful thing, but when you get expectations based on that hope you may be disappointed,” said Wieneke. “You need to take one step at a time.”

Then Wieneke had his third treatment, and he developed serious side effects. They included nausea and vomiting that was so severe he could not eat solid food, and eventually could not keep down liquids, even water. He lost his sense of smell. He lost 30 lbs (he weighed only 150 to begin with), made several visits to the emergency room, and was hospitalized with stomach flu. But at the same time, he received good news. Scans now showed the drugs were working. The tumor on Wieneke’s lung, pancreas, and colon were gone and the ones on his liver and kidney had shrunk by more than half.

“That was a really emotional time,” said Wieneke. “I felt like I was going downhill and uphill at once.” His doctor said getting the fourth treatment was very important to his cancer treatment plan, but Wieneke was afraid he’d actually die from the side effects. “But we were in it,” said Wieneke. “Our plan was to do everything we could to fight the cancer. That was the main thing. Elivira and I looked at each other and said, ‘We’re going for it. Give us the fourth treatment.’”

Feeling better

Wieneke worked hard to learn to eat again. He took prescription medications to treat the nausea and vomiting, and stimulate his appetite. He asked other patients for advice and checked out their suggestions with his doctor. Slowly, he began keeping down soups and smoothies that Elvira prepared for him, and eventually could eat small portions of bland food. Today, he can eat normally and has gained back most of the weight.  “I’m feeling better all the time,” says Wieneke. “I don’t have much stamina and I can’t smell my food, but I can eat.”

He’s returned to some of the outdoor activities he loves, though he can’t do as much as he used to, and he’s written and published a book about his experiences with melanoma. “Writing helps me understand and focus on things that are happening in my life,” said Wieneke. “When you’re trying to understand something, you don’t realize what you don’t know until you try to explain it to someone else.”

Although he’s finished with his combination treatments, Wieneke still receives Opdivo alone every other week. “Every morning Elvira and I still wake up with the realization that I have cancer,” said Wieneke. “But this is our life now. We still have a long fight ahead of us. We never know which way it’s going to go.  We just take one step at a time. We’re doing the best we can where we are right now.”

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