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‘It is a journey of discovery’: living with myeloma

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Abstract

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.

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Funding

The Western Australian Cancer and Palliative Care Network provided funding for Dr. Rosslyn de Wet’s fellowship to perform this research.

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Authors and Affiliations

  1. Sir Charles Gairdner Hospital, Hospital Avenue, Nedlands, WA, 6009, Australia

    Rosslyn de Wet, Anil Tandon, Bradley Augustson & David Joske

  2. Rockingham General Hospital, Elanora Dr, Cooloongup, WA, 6168, Australia

    Heather Lane

Authors
  1. Rosslyn de Wet
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  2. Heather Lane
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  3. Anil Tandon
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  4. Bradley Augustson
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  5. David Joske
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Corresponding author

Correspondence to Rosslyn de Wet.

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Conflict of interest

Dr. Rosslyn de Wet was awarded a 1-year fellowship by the WA Cancer and Palliative Care Network.

Dr Rosslyn de Wet has full control of the primary data which is available for review.

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de Wet, R., Lane, H., Tandon, A. et al. ‘It is a journey of discovery’: living with myeloma. Support Care Cancer 27, 2435–2442 (2019). https://doi.org/10.1007/s00520-018-4502-9

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  • DOI: https://doi.org/10.1007/s00520-018-4502-9

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