“It has been a game changer,” says Ellen Nissenbaum. “Before the trial, I had seen a major decline in my health over four years.”
It’s that time again. In less than two hours, Ellen Nissenbaum must leave her office in Washington, D.C., where she works for a nonpartisan research and policy institute. She needs to catch the train to New York. There’s the usual rush to finish everything she needs to do and pack up the work she’ll bring with her on the train.
She’s not going for a weekend of visiting friends or touring the town. She’s going to see her cancer doctor and learn whether the clinical trial of a new medicine is continuing to keep her blood cancer in check, and she’s feeling the best she has felt in years.
“When I first started making this trip two years ago, it was harried and tense,” she says. “Now it’s become a routine—and one I actually look forward to doing.”
In fact, she’s excited to see her doctor, John Mascarenhas, MD, Professor of Medicine at the Icahn School of Medicine at Mount Sinai, Director of the Center of Excellence for Blood Cancers and Myeloid Disorders, and the team at the Mount Sinai Tisch Cancer Center.
“I haven’t seen him in a while, and I look forward to learning about an upcoming change in my treatment,” she says.
If all goes as planned this time, she’ll only need to come to New York for her myeloproliferative neoplasm treatment once a month. That will make her life much easier.
Myeloproliferative neoplasms are a group of rare blood cancers where the bone marrow makes too many red blood cells, white blood cells, or platelets. About 20,000 new cases are diagnosed in the United States each year. Mount Sinai Tisch Cancer Center in New York is widely recognized as a global leader in the research and treatment of myeloproliferative neoplasms.
These blood cancers generally develop after age 50. They are chronic conditions that people can manage and live with for a long time if treated properly. However, some of these conditions can be more aggressive and develop into acute leukemia.
On the train
The train ride gives Ms. Nissenbaum a chance to settle in. It’s quiet, and she can work as the train speeds through Maryland, Delaware, and New Jersey toward Penn Station in New York. Then, she will spend the night in a hotel in Manhattan and take the subway to The Mount Sinai Hospital the next morning for her infusion therapy.
“I’ve made this trip so many times that I feel completely comfortable with it now,” she says.
She believes the clinical trial is literally making the difference between life and death.
“It has been a game changer. Before the trial, I had seen a major decline in my health over four years,” she says. “Now, because of this treatment, I have been fortunate that my cancer hasn’t made me sick or limited my life. I’m especially looking forward to seeing my test results tomorrow.”
“Ellen is a pioneer in cancer research,” says her doctor, John Mascarenhas, MD.
She often gets the lab results before the medical team does through her Mount Sinai MyChart app on her phone.
“I love seeing that. The infusion is keeping my platelets at normal levels. That’s something I hadn’t seen in 25 years,” she says.
Participation in the trial also helps cover her hotel, transportation, and meals. Without that support, she says participating would be extremely difficult for her—and impossible for many others.
Fortunately, her doctor referred her to Dr. Mascarenhas, who is an expert in myeloproliferative neoplasms. She had been with Mount Sinai for a few years when Dr. Mascarenhas presented the opportunity to her, and they made a decision to pursue this trial based on her disease features and her personal goals.
“The trial comes with costs in many ways, but those are nothing compared with what I’ve gained from being part of it and from being cared for by this incredible team,” she says.
Ms. Nissenbaum was the first person enrolled in the trial at Mount Sinai. She takes pride in knowing that the team has learned a great deal from her participation, and she hopes that knowledge will benefit others.
“I tease Dr. Mascarenhas that I’m his ‘guinea pig,’” she says.
“Ellen is a pioneer in cancer research as she was one of the very first patients in the world to receive a first-in-human immunotherapeutic for her myeloproliferative neoplasm,” says Dr. Mascarenhas. “She approached this trial and her disease with courage and a desire to be an active participant in the process. I admire her. We have been thrilled by the clinical response and the hope for disease modification in a chronic progressive hematologic malignancy.”
The Next Day
“Early Thursday morning, I wake up in New York City and head to Mount Sinai, where I’m warmly greeted by the nurses who have had my back for two and a half years,” she says.
“When I first started, I was terrified of needles, and infusions were traumatic,” she says. “The nurses listened, understood, and found ways to make the experience tolerable. Their compassion changed everything for me.”
She’s probably sat in every chair in the infusion center, and she even has a few favorites. About once a month, she brings the staff homemade chocolate-chip banana bread.
“It feels like such a small gesture for everything they do, but they seem to love it,” she says.
“When I first started, I was terrified of needles, and infusions were traumatic,” says Ms. Nissenbaum. “The nurses listened, understood, and found ways to make the experience tolerable. Their compassion changed everything for me.”
Heading home
After a half day at Tisch Cancer Center, she is ready to head home to Washington. These days, she’s excited about the possibility of coming less often while still being closely monitored remotely.
“It’s wonderful news—and another reminder of how fortunate I am to be on this trial and to have this remarkable team beside me,” she says.
*Ellen Nissenbaum is part of a phase 1, (NCT05936359) open-label multicenter study with Incyte Corporation of INCA033989 administered as monotherapy or in combination with ruxolitinib in participants with myeloproliferative neoplasms with John O Mascarenhas, MD, Professor of Medicine at the Icahn School of Medicine at Mount Sinai, Director of the Center of Excellence for Blood Cancers and Myeloid Disorders, and a member of Mount Sinai Tisch Cancer Center.