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Working Through Fears: A Myeloma Patient Story
Posted: Feb 12, 2024
Working Through Fears: A Myeloma Patient Story image

Melanie Masserant was diagnosed with multiple myeloma in 2015 at the age of 36. 

Her symptoms had begun years earlier when back pain that had ebbed and flowed for over a decade drastically changed into something that felt like nerve pain. It was debilitating, and being young and fit, Melanie knew she needed to find the source of her abnormal and unexplainable pain. 

She began seeing a physical therapist and chiropractor in 2013 but saw no progress in her pain. In fact, the pain became much worse in 2014. It was then that her chiropractor recommended that she get an MRI. 

Melanie got on the Affordable Care Act and went in for the MRI- completely unprepared to receive the news that there was a mass on her sacrum the size of a football. This mass had been pressing into her nerve- causing the pain- and needed to be biopsied. 

A neurosurgeon at Mount Sinai in New York performed the biopsy and discovered it was a  plasmacytoma- often a precursor to multiple myeloma (though it can be a sign of active myeloma itself in some myeloma patients.)

Now under the care of a radiation oncologist, Melanie underwent 30 rounds of radiation to eliminate the mass. This caused medical menopause and some other complications for her, which were especially difficult due to her young age. 

After a successful radiation treatment that brought Melanie significant relief, the neurosurgeon who performed the initial biopsy transferred her care to Dr. Hearn Jay Cho a hematologist within Mount Sinai’s Center of Excellence for Multiple Myeloma. Additionally, he is the chief medical Officer at the Multiple Myeloma Research Foundation

Dr. Cho put her under regular surveillance to catch the multiple myeloma if it began to progress. Within six months, Melanie’s Kappa Light Chains had increased over 300 and her medical team moved quickly to get her on an effective induction therapy. She also had a PET scan at this time that showed a lesion in her upper left arm. This was biopsied by a bone radiologist and confirmed to be multiple myeloma. 

When sharing her story with me, Melanie expressed her gratitude for her plasmacytoma. 

Without it, she explained, she would have not been on top of her multiple myeloma labs and would have probably missed the early indications of active disease that later presented themselves. Having a team of doctors regularly monitoring her labs made it possible for her to have a “smooth introduction” to active myeloma and its subsequent treatment. 

An autologous stem cell transplant (ASCT) was later done in the summer of 2016, which was an exhausting procedure but thankfully did not come with any significant complications aside from hair loss and GI tract issues.

This granted Melanie four and a half years of response, along with lenalidomide maintenance therapy for two of those four years. 

Prior to the ASCT, Melanie felt as if she were in shock, or simply going through the motions. Since the diagnosis of her plasmacytoma, she had felt emotionally alone, and at times, hopeless. No one expects to have a giant tumor within their body revealed, much less a 36-year-old! Because myeloma has no confirmed origins, it was also hard for Melanie to not have a “why” or “how” she ended up with multiple myeloma. 

But Melanie did not take no for an answer- she had worked hard to understand why she was having so much pain and had found the source. She had connected with a great care team and was willing to do what she needed to do in order to heal. Her diagnosis, though shocking, came with answers she had wanted for years- and while it was isolating to have a rare diagnosis like myeloma, not knowing what was wrong had been a lot worse than knowing she had an actual diagnosis. The shock eventually wore away, and she settled into her new rhythm. 

Melanie found a therapist to help her along this journey, a licensed social worker who specialized in treating people with chronic ailments or diseases. Melanie believes she wouldn’t have gotten through her journey with myeloma if she hadn’t gone through therapy. 

Though she began her therapy in fight or flight mode (she felt she was spinning for a good year and a half) she realized that through work with him, she had developed tools that helped her cope and live with myeloma. Specifically, he helped her work through her fears, the guilt of putting her parents through a cancer diagnosis of their youngest child, and reduce the comparison between herself and other myeloma patients’ experiences.  

These tools and learned lessons continue to benefit Melanie to this day. 

In the summer of 2020, as the world was adapting to lockdown, Melanie started to have back pain again. She assumed that it was due to her recent move to the Hudson Valley region two hours north of NYC, and didn’t think much of it. She let her myeloma labs lapse for six months- she didn’t get her blood work. Unfortunately, by the time the pain got bad enough for her to be seen again, the myeloma had made a vicious comeback—her Kappa Light Chain spiked to 762.

In our interview, Melanie expressed the need to tell every myeloma patient, “NEVER put yourself in the dark. Ignorance is not bliss when it comes to myeloma. Stay on top of your monitoring.” 

The relapse gave her a look into the seriousness of myeloma. While her initial introduction to active myeloma had been proactive and smooth, the roaring rage of her relapse showed her just how aggressive this disease could be. Several lesions had developed on her spine, left rib, scapula, and mid-humeral shaft. Additionally, the area that was radiated in 2014 developed a painful bone fracture because radiation caused the bone to weaken.

With the guidance of Dr. Cho, Melanie began treatment at a local clinic where she was seen by a hematologist closer to her new residence. They began her on a combination with daratumumab, which worked wonderfully at the start but eventually lost its effectiveness. They adjusted the cocktail to contain drugs such as carfilzomib and pomalidomide and Melanie experienced positive results. 

In December of 2022, Dr. Cho advocated for her to be on the CAR-T Therapy list. Melanie wasn’t sure at first. Dr. Cho explained that at her young age, this was a chance to get her off of continued therapy. Melanie had no other complications and was a low-risk candidate for this procedure. Seeing the benefits, Melanie agreed. 

She coordinated with Mount Sinai’s Dr. Adriana Rossi, Co-director for CAR T and Stem Cell Transplant at the Center of Excellence for Multiple Myeloma, and was able to secure a spot when a cancellation arose. She collected her stem cells last February and was able to receive the CARYVKTI CAR-T treatment in late June. 

Melanie was in the hospital for two weeks, with two out of the fourteen days reported as difficult. It was a breeze compared to the stem cell transplant she had experienced years earlier. Though there were side effects, they were as expected and treated promptly. The five-times-a-day cognitive assessments, though annoying, proved that no immune toxicities were affecting her. 

Her husband came with her and supported her daily. They had applied for the support program that Janssen provides for patients and caregivers getting their CAR-T treatment. This covered their hotel, taxi, and partial food costs. 

During the time she was in the hospital, Melanie passed the time with adult coloring books and audiobooks. She didn’t feel tired or sick and was able to make a quick and full recovery after the CAR-T. 

Thankfully, she ended up in complete response and continues to have no treatment today. 

Though she experiences lingering effects like chronic fatigue from the many myeloma therapies she has been given, she’s in good spirits and is concentrating on finding joy in this season of her life. 

When I asked Melanie what advice she had for other myeloma patients, she had some great responses. 

  • Stay off Google
  • When times are good, spend time in those moments, don’t think about what’s ahead 
  • Pay attention to your quality of life- it matters
  • Compartmentalize the medical part of your life 
  • Don’t make myeloma your entire life- just part of it 

One of my favorite parts of the interview with Melanie came at the end when I asked her how her myeloma experience as a younger patient is different than those who are older. Her response both surprised and comforted me. 

“Being a younger patient means that you’re going to be around when it's cured,” she shared matter-of-factly. “When I was diagnosed, there were five or six options for treatment, and that was just in 2015. With the rate that more treatments are being approved and testing is improving, I have no doubt that I will live to see the cure for multiple myeloma.” 

May we all enjoy this golden age of myeloma research as Melanie does, and continue to live in the moment with our myeloma. 

Interested in more myeloma patient experiences? Click here: Myeloma Patient Experiences

Looking to connect with other younger myeloma patients? Join our HealthTree Connect group for free: 55 and Younger Myeloma Group

The author Audrey Burton-Bethke

about the author
Audrey Burton-Bethke

Audrey is the Editor for the HealthTree Foundation for Multiple Myeloma. She originally joined the HealthTree Foundation in 2020 as the Myeloma Community Program Director. While not knowing much about myeloma initially, she worked hard to educate herself, empathize and learn from others' experiences. She loves this job. Audrey is passionate about serving others, loves learning, and enjoys iced chais from Dutch Bros. She also loves spending time with her supportive husband and energetic three-year-old. 

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