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Life-Changing Clinical Trial Offers Hope Amidst Rare Cancer

Read Time: 3 minutes

Denise Hayman

Denise Hayman doesn’t take time off. The dedicated state senator from Montana is a staunch advocate for education. “I've served in the Montana Legislature for nine years and haven't missed a day. I get in at 7 am and leave at 7 pm. It’s non-stop,” Denise says.

In August 2020, the regularly active Denise noticed she was struggling during a hike. Following a series of tests, her primary doctor suggested she see a cancer specialist.A biopsy proved difficult due to the density of Denise’s bone marrow. “It was like concrete,” she remembers. After testing, the doctor told her the verdict—advanced systemic mastocytosis with chronic eosinophilic leukemia. This rare type of cancer causes abnormal growth and accumulation of white blood cells in bone marrow and other organs.

“I asked, ‘What do I do with that?’ And my doctor said, ‘I don't know, but you're going to have to go to either Seattle or Salt Lake City.’” At that point, the world was shutting down due to the pandemic and Huntsman Cancer Institute was six hours closer to her home in Bozeman, Montana.

Despite picking a location, Denise was still dealing with a lot of uncertainty. “At that point, I didn't know what was going on. When you talk about a cancer diagnosis, you're generally thinking of cancers that you've heard of and then there's chemo, radiation, and surgery—the standard things for those of us not involved in the medical community.”

Because it is a rare disease, not many hematologists have experience in treating and managing it. Huntsman Cancer Institute is one of only 18 hospitals in the United States designated as a Center of Excellence for mastocytosis by the American Initiative in Mast Cell Diseases.

Denise’s doctor, Tsewang Tashi, MD, leads the mastocytosis program in the division of hematology at Huntsman Cancer Institute. He recommended Denise to a clinical trial for the drug avapritinib.

“Little did I know that at the time, Dr. Tashi was involved with the only targeted treatment for mastocytosis,” says Denise. “A drug trial targeting a gene mutation was really kind of like Star Wars lingo to me.”

“What luck that I happened to choose Huntsman Cancer Institute and it was running a drug trial targeted to my disease? What are the odds of that?”

—Denise Hayman

Denise Hayman

Dr. Tashi explains that Denise has two diseases at the same time, systemic mastocytosis with associated hematologic neoplasm (SM-AHN), and they are intrinsically linked. “An overwhelming majority of cases like Denise’s are driven by a defective gene called KIT,” Dr. Tashi says. “Her mutation means the KIT gene is always on. Avapritinib targets that gene and turns it off.”

Throughout the treatment process, Dr. Tashi was able to put Denise at ease. “He shared all this fairly complex information with me and laid it out on a big sheet of paper that I took home,” Denise says. “That really helped. The most important thing was that he addressed all my scientific questions. He is always touching base and looking out for things so there are no surprises. I trust him implicitly. I’m dealing with a smart, thoughtful doctor and care team.”

Within six months, Denise started seeing and feeling a difference. “I was going every couple of weeks to Salt Lake City. I would get tests: blood tests, bone biopsies, MRIs, EKGs, you name it. Everything just started to improve.”

Denise continues to take avapritinib daily, in pill form, and is followed closely by her medical team, led by Dr. Tashi. Avapritinib was approved by the FDA to treat advanced systemic mastocytosis in 2021 after showing very good results and Denise is ready to take part in more clinical trials, if necessary.

By enrolling in one of Huntsman Cancer Institute's more than 300 clinical trials, Denise is not only trying to improve her quality of life, she’s also advancing medical understanding and helping others benefit from her experience.

“Everyone at Huntsman Cancer Institute has been so terrific. I cannot say enough good things about the staff and everyone I worked with. I asked a woman drawing my blood, ‘Do you like working here?’ and she said, ‘Oh, yes, I love working here. They treat people well.’ I found that so comforting.”

Denise Hayman and family

Back in Montana, her friends don’t see a change from the Denise they knew before the diagnosis. Family time together is based around the outdoors and spent floating rivers, backpacking, fly fishing, skiing, and hiking.

When those opportunities arise, chances to surround herself with those she loves, she appreciates time together even more. “And it's all because of this serendipitous opportunity,” adds Denise. “What luck that I happened to choose Huntsman Cancer Institute and it was running a drug trial targeted to my disease? What are the odds of that?”

Cancer touches all of us.