How a Stage 4 Lymphoma Diagnosis at 29 Reshaped Her Identity

First her hair went, then her lashes and eyebrows. Treatment stripped away pieces of her appearance that had felt tied to her identity and personality.

Katie Parrinello was a full-time real estate agent and entrepreneur, a wife, a sister and a daughter when she was diagnosed with stage 4 primary mediastinal B-cell lymphoma (PMBCL), a type of non-Hodgkin lymphoma that starts in the center of the chest, at 29.

"I just felt like I got rid of either the old version of me or just a part of me that is never going back to that," Parrinello said.

Parrinello received a chemoimmunotherapy combination for aggressive lymphoma, and the effects built over time. Each cycle kept her in the hospital for four days of IV fluids, with her husband sleeping on a chair beside her. The final cycle hit her the hardest physically.

"When I come back, it's almost like the worst hangover ever," she said.

Parrinello tried to flush the drugs out of her body as quickly as she could. She gained 12 to 15 pounds during each hospital stay, and three days later, the weight would drop off because much of it came from the IV fluids. She tried to keep moving by walking laps around the hospital, but during one admission, her sneakers would not fit because of the swelling.

"My face was super puffy. I just had no control over anything," Parrinello said.

Halfway through therapy, four days before her 30th birthday, Parrinello reached remission, meaning tests no longer showed signs of lymphoma.

Her oncologist usually waits until a person finishes two cycles to evaluate how well the therapy is working. His team is now studying whether blood tests collected during the first weeks can identify signs of benefit even sooner. The research could eventually help doctors determine whether care needs to be adjusted earlier or whether some people who respond particularly well might be able to receive less therapy.

How do doctors tailor treatment for primary mediastinal B-cell lymphoma?

"Lymphoma is a very heterogeneous disease," said Dr. Andre Goy, physician-in-chief of oncology at Hackensack Meridian Health and chairman of John Theurer Cancer Center (JTCC) at Hackensack University Medical Center.

Lymphoma varies widely from one person to the next, with more than 100 subtypes. Goy explained that the first step after diagnosis is identifying the specific subtype and finding a center with experience treating it.

In young women, PMBCL typically develops in the mediastinum, the space in the chest between the lungs. Parrinello's mass had grown into her sternum, or breastbone, and reached lymph nodes in her armpit.

Her care team ran genetic tests on the cancer cells and performed a PET scan to determine where the lymphoma had spread. They also checked her heart before therapy because some drugs used for lymphoma can affect heart function.

"You look at the type of lymphoma. That's the biology, that's what matters the most," Goy said.

Parrinello had been scheduled to begin chemotherapy at another center the day after she met Goy. She switched at the last minute because of the time he spent explaining her diagnosis to her and her parents.

"He really kind of put into perspective how serious my case was and how serious and aggressive this cancer was, and I didn't really understand and realize it until he explained it to me," she said.

How do doctors know whether lymphoma treatment is working?

Goy tends not to focus on survival statistics when first discussing a diagnosis with patients. He explained that statistics from clinical trials describe outcomes across groups and cannot determine exactly how one individual will respond.

"I'd rather get them started and usually talk more about this after two cycles of chemotherapy," he said. "It scares patients before starting."

If scans after two cycles do not show enough improvement, doctors may consider adjusting or intensifying therapy. Early in Parrinello's care, Goy told her that some people reach remission before completing all of their planned cycles.

"I was nervous because I didn't believe him at first," she said.

Goy's team is now investigating whether signs of improvement can be detected much earlier through the SONAR study, a translational pilot study being conducted at JTCC. According to Goy, SONAR is a translational research study rather than a clinical treatment trial and is not registered on ClinicalTrials.gov.

Researchers collect blood on days 1, 8 and 21 and examine genetic material associated with the cancer, as well as changes in the immune system. They then compare those findings with PET scan results.

Goy said some participants have shown no measurable residual disease by day eight. Measurable residual disease, or MRD, refers to very small amounts of cancer that can remain after therapy and may not be visible on standard imaging.

The goal is to determine whether those early blood-based signals could eventually allow doctors to recognize resistance sooner or identify people who are responding particularly well.

"You might either tweak the treatment to make it better early, not wait until full-blown resistance, or if they respond so well, maybe you could reduce the amount of treatment," Goy said.

Resistance occurs when cancer stops responding to a therapy that had previously been effective.

How does hair loss affect patients with lymphoma during treatment?

Before her second cycle, Parrinello had a port placed. A port is a small device implanted under the skin that provides direct access to a vein for medication.

She was told not to wash her hair for five days while the site healed, so she wore it in a bun. By the time she could wash it, her hair had matted, and nurses had to remove it.

"That was really traumatizing," she said. "That's not the way I thought it was going to go."

She is now on her third wig. She had been told she would lose her hair after the first cycle, so she rushed to buy her first one. Martino Cartier, who runs the South Jersey organization Wigs and Wishes, provides free wigs to patients with cancer and taught Parrinello how to choose one.

Can staying active help patients with lymphoma during treatment?

Goy considers lifestyle one of the most overlooked parts of Parrinello's care. He encourages patients to begin making healthy lifestyle changes at diagnosis rather than waiting until therapy ends, saying these habits may help them tolerate care and regain strength afterward.

"Parrinello is really a good model of someone who is very, very tough, very driven, and might recover even better from chemotherapy," Goy said.

At home after each hospital stay, Parrinello focused on what she could control. She switched to a whole foods diet on her own and began prioritizing protein, which she said eased some of her symptoms. She also credits the strength she had built before her diagnosis with helping her get through chemotherapy.

"Movement is always medicine," she said.

How does life change after lymphoma treatment?

Her experience changed how Parrinello plans to live and who she counts on. Her husband, parents and sister stayed by her side through appointments and hospital stays.

"It definitely was a wake-up call for certain aspects of my life, of how to live life moving forward after this, and mostly just seeing who was there for you during this time," she said. "Those are going to be your people and your village after this is all over with, and for the rest of your life."

As she recovered, Parrinello was also able to return to her work as a real estate agent and fitness studio owner, two roles she had built before her diagnosis. She said the experience shifted her perspective on both life and work but did not take away her drive to continue building her businesses.

"You kind of have to be a little bit delusional, I like to say, and just keep the positivity going," she said. "Keep dreaming, keep going, keep striving and don't give up."

References

1. "Adjustment to Cancer: Anxiety and Distress (PDQ®)–Patient Version." National Cancer Institute. Posted: May 14, 2025.

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