Karen Estrada has videos on her phone of her intense workouts. She says she's the kind of person who exercised until she was drenched in sweat. She followed a diet rich in greens and nutrients.
Estrada, 46, lives in Miami-Dade County with her husband and two sons. Until last year, she had a full-time job, worked out at the gym often and regularly volunteered at her children’s school. She had no clue of what was to come.
"I would just feel a little bit tired — but as a mom, as a professional, you feel tired sometimes," Estrada said. "That's how I felt."
After a dental procedure turned into an infection that wouldn't heal, she found out she had acute myeloid leukemia. Her life changed immediately.
Acute myeloid leukemia (AML) impacts myeloid white blood cells. In a healthy person, these travel through the bloodstream and help our bodies get rid of viruses and bacteria that can make us sick.
A person who has acute myeloid leukemia, however, has too many of these white blood cells which haven’t yet matured, so they can’t fight infections as they should. They don't have enough mature myeloid white blood cells that function properly.
What’s more, the inefficient white blood cells stop the bone marrow from producing enough of red blood cells — which carry oxygen in the blood — and platelets, which help the blood to clot.
"The symptoms might be easy bleeding, or easy bruising and fatigue," said Dr. Justin Taylor, a physician scientist at the University of Miami Sylvester Comprehensive Cancer Center. He is part of a group of doctors that treat leukemia patients.
If a person who has AML hasn't had a blood test that may indicate the presence of this leukemia, they may have a hunch that something is wrong in other ways.
For Estrada, it was the infection.
"If it wasn't for that dental procedure, I would have not known," she said.
Across the population as a whole, AML typically develops in people 65 and older — but it disproportionally affects Hispanics or Latinos, who tend to develop it at ages younger than 65. Doctors and scientists don't know why.
"Some of it depends on country of origin or country of birth, but sometimes not," said Dr. Justin Watts, who leads the leukemia program at the Sylvester center.
He said genetics might play a role, as well as lifestyle factors such as smoking.
"There are also environmental factors likely at play. Some of it could be things like infections or viruses that are more common in certain parts of the world. Or exposure to things like radiation or other toxins," he added.
And while this disease is often curable if treated, and especially if caught early, the team say Latinos and Hispanics tend to have genetic mutations that make it harder to treat their AML.
National study to understand and treat diseases
Researchers around the country are trying to find out more about AML — and many other diseases — and why they're more likely to affect one person over another, through a research program of the National Institutes of Health called All of Us. This program will reach its fifth anniversary in May.
The NIH has PSAs to recruit participants, like this one in English:
And this one in Spanish:
The goal is to recruit enough people of many backgrounds in the U.S. — at least 1 million people.
"Participants that reflect the broad diversity of the United States," said Sheri Schully, the deputy chief medical and scientific officer of the All of Us research program.
"We specifically focus on those who have been underrepresented in biomedical research, and so that's not just ethnic and racial minorities, but also thinking about rural versus urban populations, sexual gender minorities, low income, low education.
"These folks have historically not been involved in the biomedical research that's been done to date, and so a lot of the medicine that we have available ... do not represent these underserved populations."
People can participate in the program in Spanish, too. Edgar Gil Rico, director for innovation at the National Alliance for Hispanic Health, said that shows "the willingness of changing how we do research, the willingness of understanding how important communities are, how multicultural we are."
The National Alliance for Hispanic Health is helping to recruit participants. So are organizations and institutions across the country, including the University of Miami. Gil Rico says that ultimately this data will help doctors individualize a patient’s care rather than the typical trial-and-error process when a doctor tries a medication, then another if the first doesn't work for a patient.
More than 600,000 people have signed up, so far. The program has already helped researchers working on answers to AML and other diseases.
"We will have information on how environmental factors affect that person, their family, health, history, their genetics," Gil Rico said. "The participants will help us develop this, and through their help, we are going to be able to develop these and have the kind of medicine that works for all of us."
A drug trial and finding a bone marrow donor
In Miami, doctors at the Sylvester center didn’t give up on Karen Estrada.
She was first put on chemotherapy — a drug regimen — but it wasn't enough.
"Unfortunately, the chemotherapy failed to cause a remission," said Taylor, the physician scientist at the Sylvester center.
The academic cancer center has many drug trials going on at any time, so researchers counseled her about a trial for an immunotherapy drug called magrolimab, from Gillead Sciences.
Estrada didn't feel comfortable with a drug trial at first.
"I didn't want to do a clinical trial," Estrada said. "For me at that moment was like, 'I don't want to be a guinea pig.' I was afraid. I didn’t have the knowledge, the education."
She eventually agreed to take the drug. It hasn’t yet been approved for the general public by the FDA as the trials continue — but doctors are convinced it helped save her life.
"When we give the immunotherapy, it activates cells called macrophages," Watts explained. "They go around your bloodstream, around your body, and they see these leukemia cells that are still there and they can recognize them and destroy them, leading to deeper and more lasting remissions."
After a challenging search for a match, she then received a vital bone marrow transplant from an anonymous donor.
In all, Estrada spent 10 months in the hospital, isolated from her sons because of her weak immune system. For now, she’s cancer-free.
Estrada said that life after her hospitalization is really tough. She often feels exhausted and grapples with many changes to her body, but she hopes people will learn from her experience, participate in drug trials and sign up for the bone marrow registry.
She credits the doctors, nurses, her family and a positive attitude for surviving. In February, she took part in the Dolphins Challenge Cancer event, walking with one of her nurses to raise funds for others to get the care she received.
"When they respond and they come out with a good outcome, that's why we do this," Watts said.
Taylor said he enjoys hearing from patients years later.
"When they tell you about everything they've been doing with children or grandchildren, or weddings or the events that they got to experience that when they first came in, they weren't sure they might be able to see," Taylor said. "So that's why I keep doing it. And for all the patients we don't have so great outcomes — that's why we keep doing research. We want everybody to have those good outcomes."
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