Patient Perspectives: Initial Diagnosis of Multiple Myeloma
Panelists discuss how a patient with multiple myeloma initially experienced severe fatigue, hair loss, swelling from kidney dysfunction, and overwhelming pain before being misdiagnosed with lupus, ultimately requiring emergency care where blood work and bone marrow biopsy confirmed both multiple myeloma and amyloidosis, leading to successful treatment with chemotherapy followed by stem cell transplant that achieved 5.5 years of remission monitored through regular blood draws tracking light chain levels.
The patient initially experienced subtle but concerning symptoms in 2019, including extreme fatigue, hair loss during showers, and widespread body aches, particularly in her knee. As someone who typically avoided medical care, she initially dismissed these symptoms. However, her condition progressively worsened with significant fluid retention, resulting in 28 lb of excess water weight that severely impacted her heart and overall functioning. The swelling led her to initially consult a circulation specialist, who reassured her about her vascular health but strongly recommended comprehensive blood work due to concerning underlying signs.
After initially being misdiagnosed with lupus based on her symptoms of fatigue, pain, and abnormal electrolytes, the patient’s condition continued deteriorating through Easter 2019. She described reaching a critical point where she experienced an internal voice warning her that she would die without immediate medical attention. This prompted her emergency department visit to the University of Kansas, where she was so ill that she couldn’t remember the drive. Rapid diagnostic testing through blood work and urinalysis quickly identified cancer as the likely cause, which was confirmed through bone marrow biopsy revealing multiple myeloma.
The patient’s case was complicated by a “double whammy”—she had both multiple myeloma and amyloidosis, another plasma cell disorder that had caused kidney failure. Her initial treatment included cyclophosphamide, bortezomib (Velcade), and dexamethasone, though the cyclophosphamide was discontinued due to adverse effects. She subsequently underwent successful stem cell transplantation, achieving an impressive 5.5 years of remission. During remission, she was monitored every 4 to 6 weeks through blood draws tracking her k/l scores, which served as early indicators of disease activity. Her specific diagnosis was IgG l multiple myeloma with amyloidosis, and the l light chain levels eventually began rising in November, signaling potential relapse.
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