Alan Plisskin

Addressing Common Talquetamab Misunderstandings

Long-term talquetamab patients demonstrate that initial side effects resolve even with continued treatment, with patients regaining full taste function and returning to normal quality of life while maintaining disease control. Samantha Shenoy emphasizes educating both patients and providers that toxicities improve over time rather than persisting throughout treatment duration. This message counters misconceptions that might deter patients from considering this effective therapy option.

Provider education remains crucial as many healthcare professionals are new to bispecific antibody management and may not fully understand the temporary nature of GPRC5D-related toxicities. Educational initiatives aim to build confidence among providers in prescribing talquetamab by demonstrating that while initial side effects require attention, they resolve predictably. This education helps providers counsel patients appropriately about realistic expectations for treatment tolerance.

The discussion emphasizes removing stigma around talquetamab's unique side effect profile while highlighting its excellent efficacy in heavily pretreated multiple myeloma patients. Alan and Mary Kay's positive experience after navigating initial challenges provides real-world evidence that patients can achieve excellent quality of life outcomes with proper preparation, support, and understanding of the treatment timeline. Their story illustrates that with appropriate education and support systems; patients can successfully manage talquetamab therapy and achieve meaningful clinical benefits.

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Panelists discuss how healthcare providers and patients should understand that talquetamab's unique side effects are temporary and resolve over time even while continuing treatment, emphasizing the drug's excellent efficacy and the importance of removing stigma around its manageable toxicity profile.

Advice for the Caregiver: Be a Patient Advocate

Mary Kay provides comprehensive guidance for caregivers supporting multiple myeloma patients, emphasizing the advocate role when patients may experience memory or cognitive challenges during treatment. Her recommendations include joining local support groups for peer support and information sharing, becoming familiar with myeloma-specific organizations (IMF, MMRF, LLS, BMT, Patient Power), and actively participating in educational webinars and presentations to stay current with treatment advances.

Practical caregiver responsibilities include attending all medical appointments and tests, maintaining detailed records of symptoms and side effects with specific dates and durations, and keeping current contact information for all healthcare providers readily accessible. She recommends maintaining updated medication lists and preparing question lists for medical visits as concerns arise, ensuring comprehensive communication with healthcare teams.

Alan's acknowledgment of Mary Kay's dedication—spending 10 hours daily for 43 days during his initial hospitalization—illustrates the intensive nature of caregiving for multiple myeloma patients. Healthcare providers recognize caregivers as often the first to report patient changes and provide crucial information about patient status between appointments. The caregiver role encompasses medical advocacy, emotional support, practical assistance, and serving as a critical communication bridge between patients and healthcare teams.

Panelists discuss how effective caregivers should join support groups, maintain detailed records of symptoms and medications, attend all appointments, stay informed about myeloma research, and serve as active advocates who can communicate with healthcare teams when patients cannot.

Advice for the Patient Starting Treatment With Talquetamab

Alan emphasizes the critical importance of maintaining a positive attitude throughout treatment, believing that cells respond better to positive mental states and that optimism contributes to treatment success. His advice centers on patience and persistence, acknowledging that while side effects can be challenging initially, they improve significantly over time. He stresses the temporary nature of most toxicities and the excellent quality of life achievable once the initial adjustment period passes.

Mary Kay's advice focuses on thorough preparation and knowledge acquisition, emphasizing that being informed about expected side effects makes the experience more manageable. She recommends asking questions, staying alert to patient changes, and maintaining detailed records of symptoms and side effects. Her philosophy centers on preparation reducing anxiety and improving the overall treatment experience for both patients and caregivers.

Both perspectives highlight the "wave-like" nature of talquetamab side effects, where multiple toxicities may appear simultaneously but resolve together over the first few months of treatment. Their combined advice emphasizes that surviving the initial side effect period leads to substantial improvements in quality of life, with Alan noting that patients eventually "feel like a normal person." The transition from bi-weekly to monthly dosing further improves the treatment experience as patients demonstrate disease response.

Panelists discuss how patients beginning talquetamab should maintain a positive attitude, prepare thoroughly with educational materials, and understand that while initial side effects can be challenging, they are temporary and manageable with proper preparation and support.

Managing Taste Changes and Weight Loss During Talquetamab Treatment

Alan's experience with talquetamab included multiple GPRC5D-related toxicities including hand and foot peeling, complete fingernail loss, and some toenail loss, notably without associated pain. Taste changes lasted approximately two months, while dry mouth persisted for six months, and he experienced rare post-injection fevers. His positive outcome included 15 pounds of weight gain rather than the weight loss commonly associated with taste and appetite changes.

Nutritional management strategies focus on maximizing caloric density when appetite is compromised, including high-calorie shakes like Ensure and adding healthy fats like avocado to meals. Texture considerations become paramount when taste is altered, with patients often finding satisfaction in crunchy foods like nuts or creamy textures when traditional flavors are diminished. Food presentation and making meals "events" can help maintain interest in eating despite taste alterations.

The temporary nature of taste and appetite changes provides hope for patients struggling with these side effects during early treatment phases. Alan's transition from every-two-week to monthly dosing as his disease responded illustrates how treatment intervals can be extended while maintaining efficacy, potentially reducing the frequency and severity of side effects. His testimony that "quality of life after the side effects is excellent" emphasizes that patients can return to feeling "normal" once the initial wave of toxicities resolves.

Panelists discuss how patients can maintain nutrition during talquetamab treatment by focusing on texture and food presentation when taste is impaired, using high-calorie options, and remembering that taste changes and dry mouth are temporary side effects that improve over time.

Alan Plisskin

Addressing Common Talquetamab Misunderstandings

Advice for the Caregiver: Be a Patient Advocate

Advice for the Patient Starting Treatment With Talquetamab

Managing Taste Changes and Weight Loss During Talquetamab Treatment

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