2014
DOI: 10.1111/jan.12430
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The work of living with a rare cancer: multiple myeloma

Abstract: The experience of myeloma is increasingly characterized by issues associated with chronic disease and 'survivorship'. It is important for nurses working with people with myeloma to understand the overwhelming nature of illness work in this context. Nurses can put in place supportive measures to address the two main 'drivers' of this work: constant risk to well-being of survivors (including carers) and the recurrent need to manage emotions in social interactions.

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Cited by 31 publications
(66 citation statements)
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“…In addition to this, self‐care was reported as an important aspect of the myeloma patient's journey especially when supportive care needs were felt to be unmet. Assuming autonomy over self‐care appears to be an integral aspect of the relapsed myeloma patients’ journey; however, it is important to note that each new relapse brings with it an amount of debilitation and diminished morale (Stephens et al., ). As highlighted in our study, an increased demand on self‐care extends across diagnosis, treatment and end‐of‐life care.…”
Section: Discussionmentioning
confidence: 99%
See 1 more Smart Citation
“…In addition to this, self‐care was reported as an important aspect of the myeloma patient's journey especially when supportive care needs were felt to be unmet. Assuming autonomy over self‐care appears to be an integral aspect of the relapsed myeloma patients’ journey; however, it is important to note that each new relapse brings with it an amount of debilitation and diminished morale (Stephens et al., ). As highlighted in our study, an increased demand on self‐care extends across diagnosis, treatment and end‐of‐life care.…”
Section: Discussionmentioning
confidence: 99%
“…Relapsed or refractory disease is defined as myeloma where there has been some response to treatment but has followed with relapse and then further disease progression while on salvage therapy or disease progression within 60 days of the last treatment (Richardson et al., ). Patients with a myeloma diagnosis are now living longer with the introduction of novel treatment agents; however, they must learn to adapt to the many challenges posed by this illness and treatment regimens (Stephens, McKenzie, & Jordens, ). Therapeutic advances have seen the introduction of disease‐modifying agents resulting in increased doses of chemotherapy and novel drugs such as proteasome inhibitors (bortezomib and carfilzomib) as well as immunomodulatory agents (thalidomide, lenalidomide and pomalidomide), used alone or in combination, which have significantly improved survival rates but have increased the long‐term side effects for patients (Kiely, Cran, Finnerty, & O'Brien, ).…”
Section: Introductionmentioning
confidence: 99%
“…Three of the included articles provided a definition of 'self-management'. 47,52,53 Three other articles defined 'self-care'. 43,54,55 These definitions are described in Box 2.…”
Section: Study Characteristicsmentioning
confidence: 99%
“…Global scores reflected a total rating of the effectiveness of each behaviour used, in which the weight of each behaviour may not be equal. changed in order to prolong life, 40,58 boost strength, energy and immunity, 52,58 improve quality of life, 40,51,62 increase feelings of control and independence 40,54 and please relatives. 40,54 Some patients decided to spend more time on their hobbies or engaged in new hobbies to distract them from disease-related symptoms and concerns, 41,42,48,[61][62][63] maintain physical ability 48 or get a sense of enrichment.…”
Section: Self-management Strategies and Corresponding Experiences Of mentioning
confidence: 99%
“…Multiple myeloma is a clonal B-cell malignancy characterized by the infiltration and growth of malignant plasma cells in the bone marrow microenvironment (4,31). The extracellular matrix and stromal cells in bone marrow microenvironment protecting MM cells from drug-induced apoptosis are one of the most important reasons for drug resistance and relapse, which is the so-called CAM-DR. Interactions of MM cells with BM microenvironment play an important role in the pathogenesis of myeloma and in the development of drug resistance.…”
Section: Discussionmentioning
confidence: 99%