Considerations for Treatment-free Remission in Patients With Chronic Myeloid Leukemia: A Joint Patient–Physician Perspective

Abstract

Treatment-free remission (TFR) after discontinuation of tyrosine kinase inhibitor therapy is now an emerging treatment goal for patients with chronic myeloid leukemia, who have achieved a deep and stable response to treatment. Although guidance is now available, patients' questions regarding this progressive concept have yet to be addressed. The overall aim of this European Steering Group is a patient-centered approach that educates patients on their treatment options, including TFR, facilitates better patient-physician relationships, and meets patients' emotional and psychological needs. The present report outlines 5 key topic areas on discontinuing tyrosine kinase therapy and the implications of TFR for patient-physician consideration: what TFR is; when TFR is appropriate; which patients might and might not be eligible for TFR; and patients' considerations for discontinuing therapy, such as tyrosine kinase withdrawal syndrome, potential psychological implications, molecular recurrence, and repeat treatment. This Steering Group advocates that patients with chronic myeloid leukemia should have access to high-quality, frequent molecular monitoring and be treated in a specialist center with appropriate medical and psychological support. As patient concerns with attempting TFR become forefront in patient-physician discussions, a greater number of eligible patients might be willing to discontinue therapy.

Treatment-free remission in chronic myeloid leukemia: the patient perspective and areas of unmet needs

“…The survey did not collect information on what specifically caused concerns during the probation and restarting phases, and further investigation into this would be beneficial for the healthcare and wider CML communities. This study's findings support existing recommendations [50] that psychological wellbeing of CML patients attempting TFR should be a consideration of healthcare professionals and form part of routine monitoring.…”

Tyrosine kinase inhibitor treatment discontinuation in chronic myeloid leukemia: patient views

“…Therefore, guidelines for the treatment of CML now include recommendations for TKI-treatment discontinuation [15][16][17]. In Europe, health care professionals (HCPs) and CML patient associations have also provided specific guidelines for patient counseling and education regarding the discontinuation of TKI-treatment and TFR [18].…”

Yet do much less...so much less!

“…With easy access to the Internet, patients are jumping on to this concept, in many cases without a good understanding of what is required for eligibility and safe follow-up. 7 I dare say from my own observations that some treating physicians who are not CML specialists in some cases are not aware of or paying attention to the guidelines that have been laid out for safe discontinuation. These have been laid out in detail by several experts 8 and by groups such as the National Comprehensive Cancer Network 9 and European LeukemiaNet (2019 Recommendations, R. Hehlmann et al, manuscript in preparation).…”