Living with myeloma in a regional, rural and remote setting

This national seminar explores what it’s really like to live with myeloma in regional, rural, and remote Australia, and how care can be accessed closer to home despite geographical challenges.

Clinical and laboratory haematologist Louise Inlay Gillespie provides a clear overview of what myeloma is, how it develops, common symptoms, and how it’s treated over time. She explains key concepts such as paraproteins, light chains, MGUS and smouldering myeloma, and walks through current treatment pathways, including first-line therapy, stem cell transplant, later-line treatments, supportive care, and the role of clinical trials. Louise also discusses how treatment goals and quality of life are balanced across different stages of disease, particularly for people living outside major cities.

Associate Professor Kate Burberry introduces tele trials, a national strategy designed to improve access to clinical trials regardless of location. Using real Australian data, she explains how tele trials work, what parts of a trial can be done locally, and how this model reduces travel, improves recruitment, and allows regional patients to participate in cutting-edge research without relocating to metropolitan centres.

Nurse Practitioner Karen Young shares practical insights into delivering myeloma care in regional Western Australia. She outlines common challenges such as delayed diagnosis, access to specialist services, travel burdens, and medication logistics, while highlighting solutions including telehealth, local chemotherapy units, tele-chemotherapy and tele-radiotherapy services, care coordinators, nurse practitioners, allied health, and patient travel assistance schemes.

The seminar concludes with a lived experience discussion featuring Alan and Ros from rural New South Wales, who reflect on long-term myeloma treatment, the realities of travel and side effects, the importance of self-advocacy, seeking second opinions, and staying informed as new treatments emerge.

This webinar offers practical guidance, reassurance, and advocacy-focused information for people living with myeloma, their carers, and health professionals supporting patients outside metropolitan areas.

Watch on YouTube