Podcast series: Navigating AL amyloidosis
Tune in to this series for the latest on AL amyloidosis. Host Dr 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.
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. Dr Anita D’Souza and Dr 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. Dr 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. Dr Anita D’Souza returns to discuss the complex process of identifying and confirming AL amyloidosis. She talks to Dr 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. Dr Kumar and Dr Anita D’Souza chat about how to recognise 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. Dr 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 had 9 years of misdiagnoses before a persistent cardiologist finally realised she had a single underlying disease, by which time she was very ill indeed. She tells Dr 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
Dr Anita D’Souza
Dr 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 has been in plasma cell diseases, including AL amyloidosis, and she conducts research on improving clinical outcome assessments and pathways towards 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. IRC, DSMB, steering committee, other consultancy: AbbVie, Bristol Myers Squibb, Janssen, and Prothena.
Linda Perez
Linda Perez is a retired attorney who lives in Florida with her husband, with whom she shares a daughter. She currently 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
Dr Shaji Kumar
Dr Shaji Kumar, MD, 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. Dr 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. Dr 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, BMS, Janssen, Roche-Genentech, Takeda, Pfizer, Loxo Oncology, K36, Sanofi, ArcellX, Beigene.
Developed independently by EPG Health, which received an educational grant from Alexion, awarded to EPG Health to help provide its healthcare professional members with access to the highest quality medical and scientific information, education and associated relevant content.