Abstract
Background In chronic myeloid leukemia (CML), Tasigna (nilotinib) and Scemblix (asciminib) are two current tyrosine kinase inhibitors (TKIs) that have specific administration instructions including when to eat before or after a dose (“food restrictions”). Our objective was to evaluate the impact of food restrictions on patients' dosing, adherence, and interest in an alternative TKI without food restrictions.
Methodology Overall, 152 patients, ages 21 and older, with a self-reported CML diagnosis, and in the United States, participated in an online quantitative survey. The survey was conducted from April to May 2025 among members of MyLeukemiaTeam, an online community that provides education and support for patients and caregivers. For this analysis, we focused on 119 patients (78%) who were either (1) respondents currently taking Tasigna (nilotinib) or Scemblix (asciminib) (55) (“Food restriction group”), or (2) respondents currently taking another TKI and have never taken Tasigna or Scemblix (64) (“Non-food restriction group”).
Results For the sample analyzed, patients' treatments at the time of the survey were Tasigna (27%), Scemblix (19%), Sprycel (dasatinib) (18%), Gleevec (imatinib) (17%), Bosulif (bosutinib) (8%), Imatinib (7%), and Dasatinib (4%). Overall, 63% were female, 92% were white (non-Hispanic). The median age was 67 (range 30-87). 61% had Medicare and 29% had employer-sponsored insurance.
The impact of CML treatment on positive perception of health was similar in both food restriction and non-food restriction groups. Specifically, 69% and 70% respectively reported that treatment made them optimistic about their future, and 65% and 67% responded that treatment gave them some control over their disease. However, patients in the food restriction group required more planning to follow the dosing instructions. 76% had to adjust meals timing (vs. 34% non-food restriction group), and 69% had to plan daily activities in advance (vs. 44%). Additionally, in the food restriction group, 45% reported difficulty taking the TKI as prescribed, compared to 20% in the non-food restriction group. When the food restriction group was asked about specific challenges taking treatments as prescribed, 55% reported at least one food restriction-related challenge that included: waking up early or staying up late (27%); difficulty following timing instructions for meals (24%); disrupting holidays or special occasions (18%) and avoiding food in social situations (16%). Specific narratives included, “I feel like I'm constantly watching the clock - when to eat, when not to eat, when to take my pills,” and “[You] need to make sure you're in the window to take medication when planning everything.” Food restrictions presented obstacles to adhering to instructions of not eating two hours before or one hour after dosing. When asked about the past 30 days, 33% reported not dosing on an empty stomach at least once and 29% skipped at least one dose. Most (87%) reported care provider discussion of food restrictions prior to starting a TKI, and 63% of them were told why food restrictions mattered. Only 3 patients specifically recalled risks for QT intervals prolongation, cardiac toxicity, or death. When the food restriction group was presented with the concept of an alternative TKI but without food restrictions, 56% were likely to switch if offered by their care provider. Among the 44% of patients who were unsure/unlikely, 71% responded that a discussion with their care providers could persuade them to switch.
Conclusions Our results show that for CML patients, food restriction negatively impacts adherence to Tasigna or Scemblix, with a potential risk for toxicity or disease progression. Additionally, limited social activities and stress over correctly adhering to food restrictions may negatively impact quality of life. Future research could examine factors such as time from diagnosis or treatment duration on quality of life and adherence. Oncologists should proactively discuss with CML patients the TKIs' food restrictions, its benefits on overall health, risks, and potential alternative options that offer greater flexibility.
