OBJECTIVES: Despite the high incidence of NSCLC, little is known about associated economic burdens experienced by patients and caregivers.  In a longitudinal study of newly diagnosed stage IV NSCLC patients we calculated estimates of out-of-pocket costs (OPC) and time costs (TC) for patients and caregivers.  We also explored the relationship between OPC and sociodemographic and clinical factors.  METHODS: Patients and their surrogates were asked to report OPC and TC in monthly diaries and surveys.  Monthly costs were compared in 2 disease phases: terminal phase (TP) within 2 months of death, and initial phase (IP) from diagnosis until 2 months before death (2007 US $). RESULTS: Among 196 patients, 129 received initial chemotherapy and 67 received best supportive care.  Mean age was 59 years and median income was $60,000;  40% were employed. Initial treatment choice was not associated with OPC, but phase of illness was.  Monthly mean OPCs were $372 and $582 (p-value=0.02) during IP and TP.  Prescription medications and transportation accounted for 22% v. 27%, and 15% v. 37%, of total OPC in IP and TP, respectively.  In TP, mean monthly wage losses of $1835 for patients and $419 for caregivers were reported.  87 respondents (48%) reported usage of complementary and alternative therapy, at a mean monthly cost of $107 among users.  86% of surrogates reported some effect of caregiving on work, including job loss in 6%.  Costs of lost leisure time for caregivers were significantly higher in TP compared to IP, at $3682 vs. $1579 (p-value=0.003).CONCLUSIONS: OPC and TC represent a substantial financial burden on patients and caregivers.  A vast majority of caregivers report adverse work impact.  These results support the need for programs aimed at alleviating the economic burden stemming from care-related activities that are increasingly being shifted towards informal caregivers and patients.