'It is a journey of discovery': living with myeloma

PURPOSE: Although multiple myeloma (MM) is incurable, many people live with the disease for a number of years. Thus, understanding the effect of the disease and its therapies on the lives of those with MM is important. This qualitative study explores the impact of MM and its treatments on patients.

METHODS: People with newly diagnosed or relapsed MM were recruited from a tertiary institution. Participants were interviewed using a semi-structured approach. The questions were designed to obtain insight into how participants viewed their diagnosis, treatment, and symptoms and how these had impacted on their lives. Data were analysed using a phenomenological approach.

RESULTS: Fifteen people with MM with a mean age of 62 were recruited. Participants' mean time since diagnosis was 2.7 years and they had received a mean of 1.7 lines of therapy. The first major theme to emerge was lifestyle changes. Interviewees described MM as causing changes to all aspects of their lives, including substantial functional changes, as well as changes to employment, relationships, and their sense of self. The second major theme was 'adjust, adjust, adjust'. Alongside challenging life changes, participants described a range of practical, psychological, and relational approaches to adjusting to living with MM.

CONCLUSION: This study highlights the importance of and the need for improved supportive care in patients with MM, ideally with a multidisciplinary approach. It also identifies the potential for further investigation of patient approaches to adjusting to MM and development of support strategies.