After being diagnosed with chronic myeloid leukemia, graphic designer Aaron von Freter was able to participate in a clinical trial that offered him hope of being cured.
When Aaron von Freter learned he had chronic myeloid leukemia (CML), he “felt like the room was spinning,” he remembers. “I thought I’d been served a death sentence.”
Aaron was 45 years old and had no symptoms. His diagnosis came after standard bloodwork revealed an extremely high white blood cell count.
Coming to MSK First for a Lifesaving CML Clinical Trial
A friend who had also been diagnosed with CML recommended Aaron see hematologist Michael Mauro, MD, at Memorial Sloan Kettering Cancer Center (MSK). Dr. Mauro, who specializes in the treatment of CML and other rare blood cancers, offered Aaron the opportunity to participate in a CML clinical trial of a drug that was previously available only for patients who had relapse, resistance, or strong side effects from multiple prior treatments.
Within four weeks, Aaron’s blood tests had normalized. Remarkably, he has had no side effects from treatment. Dr. Mauro is hopeful that one day Aaron’s chronic myeloid leukemia will be cured and he will no longer need to take medication.
“I’m so glad I came to MSK first,” Aaron says. “I had access to a treatment not available at other hospitals, and it made all the difference for me.”
A New Way to Treat Chronic Myeloid Leukemia
“This drug offers hope that CML patients can respond better, have fewer side effects, and ultimately live free from cancer,” says CML expert Dr. Michael Mauro.
The treatment that Aaron received as part of the clinical trial was a pill called asciminib (Scemblix®). When he was diagnosed with CML in July 2024, it was approved only for patients in whom therapy had failed. But Dr. Mauro and other experts believed patients might benefit from getting this newer drug at the beginning of their treatment. Indeed, this approach was later approved by the U.S. Food and Drug Administration (FDA), on October 29, 2024.
“This drug offers hope that CML patients can respond better, have fewer side effects, and ultimately live free from cancer,” Dr. Mauro says. “Newer and better targeted drugs have the potential to boost the possibility of curing CML and having more patients in successful treatment-free remission. Currently, most patients have needed to continue taking drugs indefinitely.”
MSK Is a Leader in Developing Chronic Myeloid Leukemia Treatments Targeting Philadelphia Chromosome
Because of the unique mutation that causes CML, patients with this rare type of leukemia were among the first to benefit from the revolution in targeted therapies that began in the early 2000s. Precision CML drugs are more effective and have far fewer side effects than traditional chemotherapy because they are designed to target the specific driver of the disease, called the Philadelphia chromosome, and the mutation it creates: BCR-ABL.
Doctors and scientists at MSK have led the development of many of the drugs used to treat chronic myeloid leukemia. The first targeted therapy ever approved for CML, imatinib (Gleevec®), was co-developed by physician-scientist Charles Sawyers, MD, who later joined MSK and has led the Human Oncology and Pathogenesis Program since 2006.
Gleevec provided remarkable turnarounds for patients with CML — many of whom were very sick — with very few side effects. But doctors observed that in some cases the cancer cells developed resistance to the drug and started growing again, or that side effects got in the way of treatment over time. These limitations led to the development of a whole arsenal of CML drugs. Now when patients stop responding, have side effects, or both under their current medication, there is usually another one they can take instead. The 10-year survival rate for the disease is currently 85%, according to the Leukemia and Lymphoma Society.
Asciminib Leads to Deep CML Remission, Lower Side Effects, and Potential for Greater Drug-Free Survival for Patients
Dr. Mauro, who co-led the early development of asciminib, believes that it will be different from other chronic myeloid leukemia treatments. “This drug works fantastically well,” he says. “Because it more frequently and more safely puts patients into what we call deep remission, after a period of time and with careful monitoring, they can consider stopping treatment completely.”
For earlier CML drugs, about half of all CML patients who have stopped medication after a period of deep remission have remained cancer free. “For patients like Aaron who take asciminib first, we believe the percentage who continue to do well after stopping treatment may be higher,” Dr. Mauro adds.
“Dr. Mauro explained that I’ll remain on my current medication regimen alongside routine checkups and blood tests every three months for the next two years,” Aaron says. “He’s optimistic that after this period, I may transition to living medication free, with only regular monitoring. If the cancer ever returns, he assured me that we’ll restart the medication promptly to address it.”
‘Being a Patient at MSK Is the Best Healthcare Experience I’ve Had in My Life’
Aaron, shown here with his girlfriend, Kristen Garland, selling posters and T-shirts he designed.
Beyond getting a recommendation from a friend, Aaron had another reason for wanting to be treated at MSK. He is the senior graphic designer for Polo Ralph Lauren, and one of his many roles with the company has been the Pink Pony Campaign, an initiative that focuses on reducing disparities in cancer treatment. MSK has been a major recipient of support from the organization, including through the funding of the MSK Ralph Lauren Center in Harlem.
“It’s been incredible to be a part of the Pink Pony campaign over the years,” Aaron says. “Now, though, it’s a lot more personal.”
Today, Aaron feels great, and is grateful for MSK. “Dr. Mauro and his whole team are incredible,” he says. “Being a patient at MSK is the best healthcare experience I’ve had in my life.”
Outside of Ralph Lauren, Aaron also creates concert posters and band merchandise. You can check out some of his artwork by visiting www.rockswell.net.
