Questions to ask: Chronic myeloid leukemia (CML)

Diagnosis

• What phase of CML do I have?
• What is my risk score (Sokal or ELTS), and what does it mean?
• Did my marrow test show any extra chromosome changes?
• Which BCR-ABL transcript type do I have, and can your lab measure it?
• How fast does my treatment need to start?
• Can I expect to live a normal life with CML?
• Should I see a CML specialist, even once, for a second opinion?
• Is there a clinical trial I should think about?
• How will CML affect my plans for work, travel, or having children?
• What should my family know about this diagnosis?

Before

• Which TKI do you recommend for me, and why?
• How do I take it: with food or on an empty stomach, once or twice a day?
• What should I do if I miss a dose?
• Do any of my current medicines, supplements, or foods interact with it?
• Can I take antacids or heartburn medicines with this TKI?
• What side effects are most likely, and which ones should I call about right away?
• Do I need any heart, blood sugar, or cholesterol tests first?
• How much will this drug cost me, and is a generic or copay help available?
• What birth control should I use while on treatment?
• Which specialty pharmacy will send my pills, and how do I refill them?

During

• What is my latest BCR-ABL level on the International Scale?
• Am I meeting the 3, 6, and 12 month milestones?
• How often will I have BCR-ABL tests now?
• If my level is not dropping as expected, should we check for a mutation?
• Is this side effect a reason to lower my dose or switch to another TKI?
• Can my blood counts handle a full dose right now?
• What can I do to remember to take my pills every day?
• Is it safe to start a new medicine another doctor prescribed?
• Who do I call after hours, and when should I go to the emergency room?
• Am I on track to be able to try stopping my TKI someday?

After

• Am I a good candidate for treatment-free remission?
• What tests will I need if I stop my TKI, and how often?
• What BCR-ABL level would mean I need to restart treatment?
• What are the chances CML will come back if I stop?
• What should I do if I get muscle or joint aches after stopping?
• If I stay on a TKI, can my dose be lowered over time?
• What long-term side effects should I watch for?
• Is it safe to plan a pregnancy now, and how?
• Are there support groups for people with CML and their families?

Last updated: 2026-10-27. Medically reviewed by Veli Bakalov, MD, medical oncologist (October 2026). General education from Step by Step, the patient portal of HemeOncBuddy.