This Remarkable MSK Patient Is Living With Two Kinds of Stage 4 Cancer

Share
MSK patient Michael Simien poses with his bicycle in front of a fountain in New York City

Although he's been diagnosed with two types of metastatic cancer, Michael Simien feels well enough to ride his bike every day, including to appointments at MSK.

To see Michael Simien darting in and out of New York City streets on his bike, you’d never guess he is 70 years old — let alone that he is living with two kinds of metastatic cancer: lung cancer that was diagnosed 10 years ago and a rare, aggressive type of non-Hodgkin lymphoma called mantle cell lymphoma that was diagnosed five years ago.

Michael is keenly aware that he has beaten the odds. When a persistent cough led him to the emergency room of another hospital, a physician told him in the waiting room his scans suggested he had lung cancer. “There goes a bone fide walking dead man,” he heard another patient say as Michael left the ER, stunned.

Michael wept and prayed, and then he got to work. His research led him to Memorial Sloan Kettering Cancer Center (MSK) for treatment, where he met with thoracic medical oncologist Helena Yu, MD. The cancer was inoperable, so Dr. Yu prescribed him chemotherapy for eight months. The side effects were rough.

“It hit me hard,” remembers Michael. “My hands and feet darkened. I kept comparing myself to a burnt match, trying to keep a sense of humor about this.”

Easier Therapy: Nivolumab Successfully Treats Metastatic Lung Cancer

Dr. Gilles Salles, Chief of MSK's Lymphoma Service in his lab coat

Dr. Gilles Salles, Chief of MSK’s Lymphoma Service, found a drug to control Michael’s cancer.

The next course of treatment was much easier: an immunotherapy called nivolumab, infused every two weeks. The tumors started shrinking, and in September 2019, Michael rang the remission bell to celebrate his last treatment.

“It felt great,” remembers Michael. “I was walking up out of the valley of the shadow of death.”

Life was good again. Michael was able to work odd jobs, after years as a New York City corrections officer and bus operator. He relished spending time with his sister and his son, Michael Jr., whom he calls “Slim.”

A Shocking Second Diagnosis: Stage 4 Mantle Cell Lymphoma

Seven months after he thought he was done with cancer, Michael was shaving and noticed swelling near his left ear and a lump in the back of his throat. A biopsy at MSK revealed stage 4 mantle cell lymphoma. He couldn’t believe it. How could he have a second cancer diagnosed at stage 4? 

MSK patient Michael Simien receiving an IV-infused treatment

“This is it for me. I was thinking about where I was going to be buried,” says Michael. “I really felt like giving up.”

His MSK care team told him the two cancers were unrelated. They were just bad luck. But there was hope: MSK’s unique diagnostic test, MSK-IMPACT®, found his cancer was caused by a mutation of the gene called TP53. It was a rare subtype of a rare kind of lymphoma. Then came the good luck: MSK’s Chief of Lymphoma Service, Gilles Salles, MD, PhD, informed Michael that he qualified for an MSK clinical trial that was testing a combination of drugs including ibrutinib.

Since the clinical trial ended in July 2024, Michael has been taking a similar drug (zanubrutinib) that’s keeping his cancer at bay with fewer side effects.

Full Speed Ahead

Michael Simien and son Michael Jr. pose for a photo on a bench under a tree in New York

Michael Simien with his son, Michael Jr.

Now Michael is doing remarkably well. His cancer is not detectable and considered “dormant.” Dr. Salles sees him at quarterly checkups, with scans every six months. He takes two zanubrutinib pills twice a day, and they’re covered by Medicare. When Michael faced other financial challenges, such as covering his rent, the team at MSK patient financial services helped him apply for a grant to help pay for necessities.

Michael tries to spread hope whenever he can. He took the dire words he heard 10 years ago in the ER and turned them into the name of his poetry blog, “Walking Dead Man.”

“People are coming to MSK thinking they are on their last legs,” says Michael. “I remember talking to a patient one day, and I ended up reciting one of my poems. I had a little audience, and they all clapped. “

Michael says he’s able to bike full speed ahead in life, thanks to the care he’s received at MSK and his positive outlook.

“It took years,” he says. “I used to think because of cancer I might not see this or I might not see that. But now I know it doesn’t matter. Because I’m here now. “