Living With Relapsed Multiple Myeloma: A Patient’s Journey Through Talquetamab and Team-Based Care

When Sarah Meredith, a music professor, was diagnosed with multiple myeloma in July 2019 during a workup for anemia, her bone marrow biopsy revealed a marrow that was 95 percent cellular, with 70 percent monoclonal lambda-restricted plasma cells. The malignancy, driven by abnormal plasma cells proliferating in the bone marrow, had been announcing itself for years through hip pain, unusual skin irritations, low energy, and low immunoglobulin levels. Her account, published as a first-person perspective in the journal Advances in Therapy alongside commentary from a nurse practitioner, an oncology dietitian, and a patient advocate from the International Myeloma Foundation, offers an unusually candid window into what it means to live with a blood cancer that, despite remarkable therapeutic progress, almost always relapses.

Meredith’s treatment history traces the modern arc of myeloma therapy. She began with the standard triplet of bortezomib, lenalidomide, and dexamethasone, gaining weight from the steroid but otherwise feeling relatively normal, before undergoing an autologous stem cell transplant in December 2019. That transplant proved grueling: a two-week hospitalization in Milwaukee, a three-hour drive from her hometown, and three to four weeks living within a 45-minute radius of the hospital afterward. She spent her birthday in a motel. Maintenance lenalidomide followed, but she relapsed roughly two years after diagnosis, moving on to daratumumab and carfilzomib, a combination that triggered fevers, facial swelling, emergency room visits, and repeated admissions for sepsis. A second relapse in March 2022 led to elotuzumab, pomalidomide, and dexamethasone, and her disease progressed again within months.

The commentary accompanying her account notes that Meredith’s disease moved faster than typical. In one analysis of United States electronic health records, the median time from first treatment to a second regimen was 46.7 months, and in a referral-center study the median time to a third treatment in relapsed patients was 16.6 months, both roughly twice the pace of Meredith’s progression. In a clinical study of daratumumab, carfilzomib, and dexamethasone, serious infections occurred in 19 percent of patients, but sepsis was not reported, underscoring how individual responses to the same regimens can diverge sharply from trial averages.

With few options remaining, Meredith enrolled in a clinical trial of chimeric antigen receptor T cell, or CAR-T, therapy in 2022. Bridged with daratumumab, bortezomib, and dexamethasone while increasingly ill, she received the engineered cells and spent four weeks hospitalized, developing severe cytokine release syndrome, a systemic inflammatory reaction in which immune cells flood the bloodstream with signaling proteins, that required several days in the intensive care unit. A later readmission for neutropenic fever followed. Recovery took months, but she emerged symptom- and treatment-free for 18 months, until May 2024, when a lesion on her sternum signaled yet another relapse. Her hematologist recommended talquetamab, a bispecific antibody she had never heard of, and with no clinical trials available to her, she agreed to try it.

Talquetamab works differently from CAR-T. It is a bispecific antibody that redirects T cells against GPRC5D, a protein abundant on myeloma cells, and it is approved for triple-class exposed relapsed/refractory multiple myeloma. Nurse practitioner Donna Catamero, who cares for myeloma patients at a large academic center and whose hospital enrolled the first patient on talquetamab monotherapy in the pivotal MonumenTAL-1 trial, describes two ideal candidates: patients needing a bridge to CAR-T therapy, and patients like Meredith who relapse while on a B cell maturation antigen, or BCMA, directed therapy such as a CAR-T product or a BCMA-targeting bispecific. In this heavily pre-treated population, she reports, complete remissions with durable responses have been observed, something rarely seen before in patients with so many prior therapies.

The drug’s side effect profile is distinctive because GPRC5D is also expressed in normal tissues. In MonumenTAL-1, cytokine release syndrome occurred in 75 to 79 percent of patients, but most events were low grade, occurred at or before the first full dose, and resolved, which is why step-up dosing and mandatory hospitalization during the initial doses are built into the treatment protocol. More than 70 percent of patients experience taste changes, and dry mouth, weight loss, rash, skin disorders, and nail changes are common. Skin and taste problems tend to appear within three to four weeks, while weight and nail changes develop more slowly. Rashes generally resolve within weeks, but taste, nail, and weight changes often persist, with modest improvement over time in most patients.

Meredith experienced this profile firsthand. She spent two weeks hospitalized at the start of treatment and had cytokine release syndrome, from which she recovered before discharge. Severe itching and red blotches on her face and body emerged first, managed with daily baths with bathing salts, allergy medications, and alcohol-free medical creams, resolving after five to six weeks. Nail discoloration and transient blurred vision followed. She lost 45 pounds during treatment, and the most burdensome effects were taste changes and dry mouth, which she managed by experimenting with cold liquids such as popsicles, ice cream, and smoothies, and soft foods including applesauce, mashed potatoes, pasta, and fish. After three to four months the side effects decreased substantially, and she is now in month 19 of treatment, feeling better emotionally and physically than she did after CAR-T.

The clinical machinery behind these outcomes is elaborate. Catamero’s team educates patients and care partners about cytokine release syndrome symptoms, including fever and hypotension, monitors vital signs every four to six hours during step-up dosing, and deploys intravenous fluids, oxygen, antipyretics, and, when needed, the interleukin-6 inhibitor tocilizumab or steroids. The US label advises that doses may be delayed to manage oral toxicity, and reducing dose frequency after a response is achieved has proven helpful and is supported by trial evidence. Dietitian Isabelle Wlodkowski provides mandatory nutrition consultations during the hospital stay, counseling patients on high-calorie, high-protein strategies, eight to ten cups of fluid daily for dry mouth, sugar-free gum, small frequent meals, and home weight tracking. A phase 2 study called TALISMAN is now using an objective instrument, the Waterless Empirical Taste Test, which preliminary results suggest can detect taste changes earlier than patient self-report and capture improvement as early as three months after treatment begins.

The transition from inpatient to outpatient care is where the multidisciplinary model earns its keep. Catamero emphasizes laboratory monitoring for infections and cytopenias, prophylaxis strategies, rapid pathways for evaluating fever, and proactive screening for skin and oral toxicities that patients often under-report until advanced. A safe handoff between a specialist center and a community oncologist depends on an explicit shared care plan covering dose schedules, prior cytokine release syndrome or neurotoxicity grades, 24/7 triage phone numbers, and shared toxicity algorithms. Patient advocate Becky Bosley of the International Myeloma Foundation stresses preparation for the hospitalization required during step-up doses, including delegating family and work responsibilities and planning financially for copays, and points to the foundation’s more than 150 myeloma-specific support groups and its AI-powered chatbot, Myelo, which answers questions using only information from myeloma.org.

Meredith’s care now spans a myeloma specialist, a local hematologist-oncologist, cancer nurses, a nutritionist, and an in-house patient advocate, with nursing staff having arranged treatment at a facility closer to home to ease the burden of traveling every other week. Her husband attends nearly every appointment, and she belongs to local and Mayo Clinic-affiliated support groups while following educational programming from the International Myeloma Foundation, the Multiple Myeloma Research Foundation, the Leukemia & Lymphoma Society, and the American Cancer Society. Her light chain lab values have been stable at every visit, her advice to new patients is to give the treatment six to eight weeks before judging it, and she teaches voice lessons, gardens, and exercises again. Her story illustrates a central message of the perspective: in relapsed myeloma, the drug is only half the treatment, and the coordinated team around it is what keeps patients on therapy and living well.

Subject of Research: Patient and clinician perspectives on living with relapsed/refractory multiple myeloma and multidisciplinary management of talquetamab therapy

Article Title: Perspectives on Living with Relapsed/Refractory Multiple Myeloma and Multidisciplinary Care from a Patient, Nurse Practitioner, Dietitian, and a Patient Advocate

Article References: Bosley, B., Wlodkowski, I., Catamero, D., & Meredith, S. (2026). Perspectives on Living with Relapsed/Refractory Multiple Myeloma and Multidisciplinary Care from a Patient, Nurse Practitioner, Dietitian, and a Patient Advocate. Advances in Therapy. https://doi.org/10.1007/s12325-026-03801-2

Image Credits: AI Generated

DOI: 10.1007/s12325-026-03801-2

Keywords: multiple myeloma, relapsed/refractory myeloma, talquetamab, bispecific antibodies, CAR-T therapy, cytokine release syndrome, GPRC5D, dysgeusia, supportive care, oncology nutrition, patient advocacy, multidisciplinary care