Navigating Myeloma Together: Sholeh and Shwan

When Sholeh was diagnosed with multiple myeloma in February 2017, her life—and that of her son Shwan—changed forever. Shwan, a PhD student in biomedical engineering at the time, found himself balancing the roles of caregiver and scientist, reshaping his career and personal life in response to his mother’s diagnosis.

A Shock Diagnosis

Sholeh recalls how her diagnosis unfolded: “I didn’t know what multiple myeloma was at all. I had been experiencing persistent back pain, and doctors kept referring me to specialists. Late one night, after returning home from a party, I checked my hospital health chart and saw that my test results were all off. I called Shwan, and he said he would investigate further. Thirty minutes later, he called me and said, ‘I’m sorry, Mom, I think you have cancer.’” 

Shwan encouraged Sholeh to call back in the morning and talk to the physician on call (it was a Sunday). After a while, the diagnosis was officially confirmed as smoldering myeloma. 

For Shwan, the news was overwhelming. “I spent that night wide awake,” he remembers. “The survival rates for myeloma back then were grim. It was terrifying to think about what lay ahead.” Despite the fear, Shwan began researching trusted resources, diving into a disease that had never been on his radar. He soon took a leave of absence from his PhD program to become his mother’s primary caregiver.

Finding Meaning in Shared Moments

The journey wasn’t easy. Shwan recalls one particularly harrowing moment during Sholeh’s bone marrow biopsy in 2017. “They were using local anesthetic, and something went wrong. She fainted, and they called a Code Blue. I knew the low survival rates for that code and sat helpless outside the room as a team rushed in to save her.”

Over time, Sholeh’s diagnosis progressed into active myeloma. After an initial induction therapy of VRd, physicians recommended a stem cell transplant. As a side effect of the melphalan, Sholeh’s hair started to fall out. This made the cancer real for Shwan. However, he didn’t back down. 

Despite the challenges, Sholeh and Shwan found ways to stay grounded. 

“[During the stem cell transplant], we marathoned Outlander and played endless card games,” Shwan says. “Her hospital room became the party room, with nurses and patients joining in. It was about finding some light in the darkness.”

Sholeh and Shwan playing games during infusion

Sholeh’s Perspective

Since her diagnosis, Sholeh has undergone five different lines of treatment, including the aforementioned stem cell transplant in 2018 and later a CAR T-cell therapy in January 2024. She has surpassed the initial 3-5 year survival estimate she was given. Her journey has not been without challenges, including heart complications that led to requiring a pacemaker. Yet, she stays focused on living her life.

“You have to push through,” Sholeh says. “I walked the hospital floor every day after my stem cell transplant. It’s not about giving up—it’s about doing what you can to keep moving forward.”

After Sholeh got her pacemaker, her doctors emphasized the importance of staying active to improve her heart function. Shwan had an idea: he got her a Goldendoodle puppy named Atish. In Persian, Atish means fire, and Sholeh’s name means flame—together, they became the fire and the flame.

Atish turned out to be exactly what Sholeh needed, encouraging her to go on walks and stay active. The results were remarkable—her recovery was quicker than her doctors had expected, and her heart function improved significantly.

Her advice for other multiple myeloma patients reflects her experiences: “Don’t lose hope. Even on the hard days, find something to hold on to. Surround yourself with people who lift you up and find moments of joy where you can. Happiness is really important.”

Connecting Caregiving to Research

Shwan’s experience as a caregiver deeply influenced his professional path. After moving back to Salt Lake City to be the primary caregiver for Sholeh, he joined a lab at his alma mater, the University of Utah, to study hematology, synthetic biology, and cell-based therapies.

Eventually, after graduation, he applied to become a Postdoctoral Scientist on the Multiple Myeloma Discovery Team at Johnson & Johnson. He now has the opportunity and great privilege to work alongside many of the scientists at J&J who developed daratumumab, cilta-cel, teclistamab, and talquetamab.

“Seeing the side effects my mom experienced firsthand shaped my approach to research,” Shwan explains. “It’s not just about killing cancer cells. It’s about making treatment tolerable and manageable for patients.” 

His dual role allows him to navigate his mother’s treatment with a level of expertise that is invaluable. 

When Sholeh went through the CAR T cell therapy, she spiked a fever —a potential sign of cytokine release syndrome (CRS). Shwan quickly consoled his mother, reassuring her that it was something predictable and treatable. He also helped the doctors recognize when some neurological warning signs were off in his mother- a flag that guided them to give her tocilizumab to manage side effects. 

Advice for Myeloma Caregivers

For caregivers, Shwan emphasizes patience. “You’re going to see sides of your loved one that you’ve never seen before. It’s emotionally draining, but it’s also an opportunity to be there for them in a way no one else can.”

He also encourages multiple myeloma caregivers to educate themselves. “Understand the disease and treatments. It’s easier to provide meaningful support when you know what to expect.”

Unstoppable Together 

Sholeh’s story highlights the importance of perseverance and support. With Shwan’s expertise and care, she continues to navigate her myeloma journey, while Shwan’s work contributes to advancements in research.

“This is a moving target,” Shwan says. “The myeloma landscape is evolving rapidly, and there’s so much more we can do. Even if my mom can’t benefit from the research that is on its way to improve [myeloma] treatment, future moms will be able to.” 

For patients, caregivers, and researchers alike, their journey reminds them of the impact of determination and the critical role of collaboration in facing challenges head-on.

Read more myeloma patient and caregiver experiences here: Myeloma Stories 

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