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A Diagnosis I Never Saw Coming: A Myeloma Patient Story
Posted: Oct 31, 2023
A Diagnosis I Never Saw Coming: A Myeloma Patient Story  image

At 50 years old, Kim never expected to be diagnosed with an aggressive cancer, especially in another state, after taking care of her daughter. 

Kim and her husband had made a cross-country drive from California to Wisconsin in August of 2022, supporting their daughter after a medical procedure of her own.

After spending some time in Wisconsin, Kim began to feel intense pain and knew that something was wrong.

It was a holiday weekend, and hardly any clinics were open. Her daughter pleaded with her to drive to the nearest hospital when Kim admitted the pain was the worst she had ever felt. 

Agreeing, Kim and her mother drove to the hospital to consult with the doctor. He originally prescribed a muscle relaxer and was ready to send Kim home, but Kim knew within her that something more serious was going on. She advocated for an X-ray. 

The doctor performed an X-ray and entered the consultation room with the results, white as a sheet. 

Kim was shocked as the first words out of his mouth were, "I don't know how you aren't dead or paralyzed!" 

He went on to explain that a mass had eaten out Kim's C6 vertebrae, and she had two other vertebrae in her neck that were broken. 

Before she knew it, Kim was being put into a hard neck brace and rushed to the emergency room. For the next 14 hours, she was rushed in and out of hospital rooms as the medical staff performed over 25 tests, including the kappa/lambda free light chain test, which showed troubling results. 

She was later told that she had masses (which she would later come to know as plasmacytomas) all over her body, along with lesions in multiple bones. Some of these masses were in concerning places, such as her head. 

She spent a further eight days in the hospital as a myriad of medical staff investigated her disease to see how a 50-year-old woman could have appeared in the hospital with end-stage myeloma with practically no warning signs. They also performed emergency surgery to remove her C6 mass and fuse the broken bones within her neck.

Radiation followed, trying to treat the plasmacytomas in her head and neck. A special radiation mask had to be made for Kim, as her neck brace prevented the normal radiation mask from fitting. 

Her bone marrow biopsy also required modifications due to her neck brace and the need to stay extremely still. 

Thankfully, she was out of the woods in time and began her five cycles of induction therapy with lenalidomide, daratumumab, bortezomib, and dexamethasone. A bone strengthener, Zometa, was later added. 

The next step in her care was a stem cell transplant. This didn't come without complications, as unfortunately, Kim experienced a bacterial infection in her port, 
electrolyte imbalance, mucositis, dehydration, low blood counts, immune deficiency, and neutropenia.

She continued with persistence and made a successful recovery. Kim credits her positive, hopeful attitude to her survival. 

"I would remind myself, Kim! You can do hard things. You've come this far. You can do this!", she shares. 

On July 25th of this year, she received excellent news. The stem cell transplant was successful and she had achieved an MRD (minimal residual disease) negative result. She started her lenalidomide maintenance and finally transferred her care back to Southern California. 

Kim will continue with regular monitoring, including regular PET scans and monthly blood lab check-ins to make sure her disease stays under control. 

There's no stopping her now! 

Kim would like to thank the University of Wisconsin Madison medical team - especially Dr. Gahvari and Dr. Callander, to whom she owes her life. They deserve to be recognized. She would also like to thank Dr. Nagler at Scripps, who still collaborates with the University of Wisconsin on her care. 

For more information on Kim's story, you can watch the video here:

And to read more myeloma patient experiences, read here: Myeloma Patient Stories 

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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