Lena Fauske1, 2Email author, Ivar Hompland1, Geir Lorem3, Hilde Bondevik2 and Øyvind S. Bruland1, 4 Clinical Sarcoma Research20199:6 https://doi.org/10.1186/s13569-019-0116-3 © The Author(s) 2019 Received: 9 November 2018 Accepted: 17 April 2019 Published: 30 April 2019 Abstract Background This study aims to explore how patients with metastatic gastrointestinal stromal tumour (GIST) experience the adverse effects of treatment, as expressed by the individuals themselves.