Questions to ask: Leukemia

Diagnosis

• What type of leukemia do I have: AML, ALL, CML, CLL, or another type?
• Is it acute or chronic? How quickly do I need to start treatment?
• What did my bone marrow biopsy show?
• Which gene tests were done, such as FLT3, NPM1, IDH, TP53, or BCR-ABL?
• When will all my gene test results be back, and could they change my plan?
• What is my risk group, or my CML phase or CLL stage? What does that mean for me?
• For CLL: what are my IGHV and TP53 results? Do I need treatment now, or can we watch and wait?
• Is the goal of treatment to cure the leukemia or to control it?
• Might I need a stem cell transplant? Should my brothers and sisters be tested as donors?
• Should I get a second opinion at a leukemia center?
• Is there a clinical trial that fits my type of leukemia?

Before

• What treatment do you recommend, and why is it right for my type of leukemia?
• Will I be in the hospital? For how long?
• Will I need a central line or port for treatment and blood draws?
• How often will I need blood tests, bone marrow tests, or transfusions?
• What infection prevention medicines will I take?
• What side effects should I watch for, and who do I call at night or on weekends?
• Could this treatment affect my fertility? Is there time to save sperm or eggs?
• If I take pills at home, how should I take them, and what foods or medicines should I avoid?
• How much will my pills cost, and is there help paying for them?
• Which vaccines should I get, and which should I avoid?
• Can I keep working during treatment?
• What can my caregiver do to help, and what should they watch for?

During

• Am I in remission? What did my latest bone marrow test show?
• Is my MRD test negative? What does that mean for my next steps?
• For CML: what is my BCR-ABL level, and am I meeting my treatment goals?
• What are my blood counts today? Do I need a transfusion?
• Which symptoms mean I should go to the emergency room?
• Are any of my other medicines or supplements a problem with my treatment?
• Can I be around children, crowds, or pets? Are there foods I should avoid?
• If I get blinatumomab, how does the pump work, and what if it alarms?
• After CAR T cells or a transplant, how long must I stay nearby, and who must stay with me?
• What support is there for my family and caregiver?

After

• How often will I need blood tests or bone marrow tests now?
• What signs could mean the leukemia has come back?
• If it comes back, what are my options, such as targeted drugs, CAR T cells, or transplant?
• For CML: could I ever stop my TKI? What would that involve?
• What long-term effects could my treatment cause, and what checkups do I need?
• When should I get my vaccines again?
• How can I lower my risk of infections and skin cancers over time?
• Who will lead my follow-up care, my oncologist or my primary doctor?
• Can I get a written summary of my treatment and follow-up plan?

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.