Questions to ask: Acute lymphoblastic leukemia (ALL)

Diagnosis

• Do I have B-cell or T-cell ALL?
• Is my ALL Philadelphia chromosome-positive or negative? Is it Ph-like?
• What other gene changes did my tests show, and what do they mean?
• Has the leukemia reached my brain or spinal fluid?
• Is my ALL standard risk or high risk?
• What is the goal of my treatment?
• Should I be treated at a center with experience in adult ALL and transplant?
• Would a pediatric-inspired treatment plan make sense for me?
• Should my brothers and sisters be tested as possible stem cell donors?
• Is there a clinical trial that fits me?
• Is there time to save sperm or eggs before treatment?

Before

• Which drugs are in my treatment plan, and how long will each phase last?
• Will I stay in the hospital? For how long?
• Will I need a central line or port?
• How often will I need a spinal tap, and what will it feel like?
• What side effects are most likely, and which ones should I call about right away?
• Which medicines will I take to prevent infections?
• If I take a TKI, how should I take it, and what should I avoid with it?
• Will I be able to work, go to school, or care for others during treatment?
• What should my caregiver watch for at home?
• Who can help with costs, insurance, and travel?

During

• Am I in remission?
• What did my MRD test show, and what does it change?
• Will I get blinatumomab or inotuzumab, and when?
• If I get blinatumomab, how do I care for the pump at home?
• Do I need a transplant, or can I skip it?
• Has a donor been found? What kind of donor would I have?
• Are my blood counts safe for the next round?
• Is my numbness, joint pain, or belly pain a reason to change treatment?
• What should I know about maintenance, and how long will it last?
• Who do I call after hours, and when should I go to the emergency room?

After

• How often will I need blood tests or marrow tests, and for how long?
• What signs could mean the leukemia is coming back?
• If ALL comes back, would CAR T, blinatumomab, inotuzumab, or a transplant be options?
• How long will I need to take a TKI, if I have Ph+ ALL?
• Which vaccines do I need, and when?
• What late effects should I watch for, such as bone, heart, or memory problems?
• Who will follow my long-term health, and do I need a survivorship care plan?
• When can I go back to work, school, travel, or sports?
• Are there support groups for adults or young adults with ALL?

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.