Here is some new research with regard to quality of life for myeloma patients.
"Patients with multiple myeloma have a high symptom burden and low HRQOL, in the advanced and the earlier stages of disease. Identification of patients in need of supportive care should focus on assessing patient-reported outcomes such as symptoms and functioning regularly in clinical practice, complementary to traditional biomedical markers."
As shown in an earlier study mentioned in this thread, the best quality of life comes during the treatment-free interval, but myeloma patients still experience a high symptom burden during this period.
"In the first multivariate model including all symptoms and demographic and clinical characteristics found positively associated in the bivariate analyses (see Additional file 1: Tables S2 and S3), only the symptoms pain, fatigue, anxiety and depression as well as poor mobility remained significant in their association to the global quality of life item of the QLQ-C30. Controlling for general symptom level did not alter the results. In the final multivariate trimmed model, the quality of life score was significantly and independently associated with a higher pain level, higher fatigue level, more mobility problems, more anxiety and depression and an ECOG performance status of 2 (Table 4). Those in a treatment-free interval experienced better quality of life. The final multivariate trimmed model for the outcome EQ5D Index score contained the variables pain, drowsiness, poor mobility, depression and ECOG performance status of 2, but no effect of phase of illness was found, nor an effect of general symptom level (Table 4)."
One surprising finding is how common breathlessness is for myeloma patients. From reading here in the Forum, I would not have thought it was this high of a percentage experiencing this side effect.
"One surprising finding was the high prevalence of breathlessness that was reported by 60.8 % of participants. The severity of shortness of breath had a mean of close or above 2.0 in all treatment phases – from diagnosis and prior to first-line treatment to later phases post the second treatment-free interval. However, this finding might be explained by cardiac or pulmonary complications either resulting from the disease itself, from treatments received (with patients receiving immunomodulatory agents or bortezomib being at increased risk of experiencing pulmonary adverse events) [45, 46], or – given that our study included a predominantly older population with a mean age of 68.4 years – also being a consequence of age-related comorbidities. A limitation of our study is that number of comorbidities was not assessed and that lack of assessing this potential confounder might affect the relationship between symptoms, performance status and palliative care concerns or quality of life. Future studies should focus on the relationship between comorbidity, treatment intensity, disease progression and HRQOL."
One thing to note is that 95% of the patients in this study did not have a transplant,
Reference:
Ramsenthaler, C., et al, "The impact of disease-related symptoms and palliative care concerns on health-related quality of life in multiple myeloma: a multi-centre study," BMC Cancer, July 2016 (full text of article)