Podcast: Navigating AL Amyloidosis
Expert insights and patient perspectives on AL amyloidosis
Tune in to this series for the latest on AL amyloidosis. Host Shaji Kumar (Mayo Clinic, Rochester, Minnesota, USA) talks to fellow specialists and a person with AL amyloidosis about topics ranging from disease impact to multidisciplinary care.
Evolving diagnostic practices in AL amyloidosis
Episode 6. Diagnostic delays remain a defining challenge in AL amyloidosis, where subtle red flags are often misattributed to far more common conditions. Vaishali Sanchorawala and Shaji Kumar explore the practical steps clinicians can take to recognize AL amyloidosis earlier in the diagnostic journey. Their conversation examines how to heighten clinical suspicion, optimize the use of surrogate biopsy sites, and navigate the increasingly complex landscape of amyloid typing.
Clinical trials and emerging therapies: Bridging innovation and access
Episode 5. As therapeutic innovation accelerates in AL amyloidosis, clinicians are confronted with a rapidly shifting treatment landscape. Taxiarchis Kourelis joins Shaji Kumar to examine how emerging modalities, including cellular therapies, targeted agents, and organ-directed approaches aimed at amyloid clearance, may reshape long held treatment principles. Kourelis reflects on the evolving role of transplant, the promise and pitfalls of immunotherapy-based approaches, and the practical realities of treatment accessibility.
Not a one-size-fits-all approach: Treatment and management of AL amyloidosis
Episode 4. While myeloma is used as a blueprint for treatment of AL amyloidosis, it does not truly reflect its complexity. Anita D’Souza and Shaji Kumar discuss the role of clinical trials, the use of autologous stem cell transplant, and how the nature of AL amyloidosis alters response to and side effect profiles of myeloma treatments. D’Souza also offers advice on monitoring treatment response and the steps to take when response is poor.
The long road to diagnosis of AL amyloidosis
Episode 3. Anita D’Souza returns to discuss the complex process of identifying and confirming AL amyloidosis. She talks to Shaji Kumar about how she uses tests – from blood tests to mass cytometry – in the diagnostic process, why a negative biopsy does not always rule out AL amyloidosis, and why a multidisciplinary approach is critical for good patient outcomes.
The many faces of AL amyloidosis
Episode 2. AL amyloidosis can present with an astonishing variety of symptoms that masquerade as other diagnoses, making it very easy to miss. Shaji Kumar and Anita D’Souza chat about how to recognize when there could be a single underlying cause of accumulating diverse symptoms – and why it’s so important to consider the whole patient to avoid diagnostic delay. D’Souza also talks about strategies for identifying and managing AL amyloidosis coexisting with multiple myeloma.
Beyond the diagnosis: Patient voices and holistic care
Episode 1. Linda Perez endured 9 years of misdiagnoses before a persistent cardiologist finally realized she had a single underlying disease, by which time she was very ill indeed. She tells Shaji Kumar about the huge physical and emotional impact of the disease, the support that patients need from their healthcare team versus what is available, and how different specialists can work together with the patient to successfully manage AL amyloidosis.
Meet the experts
Shaji Kumar, MD
Shaji Kumar is a consultant in the Division of Hematology, and Mark and Judy Mullins Professor of Hematological Malignancies at Mayo Clinic in Rochester, Minnesota, USA. He is Chair of the Myeloma, Amyloidosis and Dysproteinemia Disease Group at the Mayo Clinic, and Research Chair for the Division of Hematology. Kumar’s research focuses on the development of novel drugs and drug combinations for myeloma. His laboratory focuses on the role of the bone marrow microenvironment in the development of myeloma. Kumar is Chair of the National Comprehensive Cancer Network (NCCN) Multiple Myeloma Guidelines Panel.
Disclosures: Clinical trial funding: AbbVie, Amgen, Allogene, Bristol Myers Squibb, CARsgen, GSK, Janssen, Regeneron, Roche-Genentech, Takeda. Consulting / advisory board participation (with no personal payments): AbbVie, ArcellX, BeiGene (BeOne), Bristol Myers Squibb, Janssen, K36, Loxo Oncology, Pfizer, Roche-Genentech, Sanofi, and Takeda.
Anita D’Souza, MD
Anita D’Souza is Professor of Medicine in the Division of Hematology/Oncology at the Medical College of Wisconsin and the Froedtert and MCW Cancer Center, Milwaukee, USA, where she also serves as Associate Chief, Research, and chairs the Plasma Cell Disorders team. Her clinical focus is in plasma cell diseases, including AL amyloidosis, and she conducts research on improving clinical outcome assessments and pathways toward earlier diagnosis for patients with this disease. She serves on the board of the International Society of Amyloidosis.
Disclosures: Funding support: AbbVie, Alexion, Janssen, Novartis, Prothena, Regeneron, and Sanofi. Advisory boards: Bristol Myers Squibb, Janssen, Pfizer, and Prothena. Independent review committee, data and safety monitoring board, steering committee, other consultancy: AbbVie, Bristol Myers Squibb, Janssen, and Prothena.
Linda Perez
Linda Perez is a retired attorney who lives in Florida, USA, with her husband and daughter. She spends her time serving as a university board trustee in Florida and doing advisory work at her undergraduate university in New Jersey. She also serves as a patient educator for the Amyloidosis Speakers Bureau and participates in podcasts produced by MacKenzie’s Mission on topics relating to amyloidosis. She was diagnosed with AL amyloidosis in 2018, at the age of 64.
Disclosures: None
Taxiarchis Kourelis, MD
Taxiarchis Kourelis is an Associate Professor of Medicine and Oncology at Mayo Clinic, Rochester, Minnesota, USA, specializing in amyloidosis and dysproteinemias. His research focuses on tissue‑level injury from amyloid deposition, using proteomic and systems‑biology approaches to characterize cardiac and renal amyloid plaques. He has characterized immunoglobulin variable‑region features and light‑chain glycosylation relevant to AL amyloidosis and is developing renal organoid models and novel therapeutic strategies.
Disclosures: Research funding from Amyloidosis Foundation, Mayo Myeloma SPORE, Multiple Myeloma Research Foundation, and NIH Paul Calabresi Program.
Vaishali Sanchorawala, MD
Vaishali Sanchorawala is Professor of Medicine and Director of the Amyloidosis Center at Boston University School of Medicine and Boston Medical Center, Massachusetts, USA. She is internationally recognized for her clinical research in immunoglobulin light‑chain AL amyloidosis. Sanchorawala leads multiple clinical trials advancing treatment strategies for AL amyloidosis and serves on the Executive Steering Committee of the Amyloidosis Research Consortium. She is an Associate Editor of Amyloid: The Journal of Protein Folding Disorders and previously served as Secretary on the Board of the International Society of Amyloidosis.
Disclosures: Leading clinical trials, such as multiple AL amyloidosis studies (institution based). Professional services for Amyloidosis Research Consortium, Amyloid: The Journal of Protein Folding Disorders (Editorial Board), and the International Society of Amyloidosis (former Secretary).
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