Questions to ask: Chronic lymphocytic leukemia (CLL)
Diagnosis
- Do I have CLL, SLL, or monoclonal B-cell lymphocytosis?
- What is my Rai or Binet stage, and what does it mean for me?
- Do I need treatment now, or is watch and wait the right plan?
- What would make you decide it is time to start treatment?
- Has my FISH test been done? Do I have del(17p) or a TP53 change?
- Is my IGHV gene mutated or unmutated, and what does that mean?
- What is my CLL-IPI score?
- How often will I need blood tests and visits while we watch and wait?
- Which vaccines should I get now, before any treatment?
- Should I see a CLL specialist, even once, for a second opinion?
- Is there a clinical trial I should think about?
- Should my family members be checked for CLL?
Before
- Why is it time to start treatment now?
- Should I take a BTK inhibitor every day, or a fixed-duration treatment that stops after a set time?
- Which choice is best for my gene test results and my other health problems?
- Will my FISH and TP53 tests be repeated before I start?
- How is each drug given, and how often do I need to come in?
- If I take venetoclax, how will you protect me from tumor lysis syndrome? Will I need to stay in the hospital?
- Do any of my current medicines, supplements, or foods interact with these drugs?
- Do I need to stop my blood thinner or aspirin?
- Will I take medicines to prevent infections, like shingles?
- What side effects should I call about right away?
- How much will treatment cost, and who can help with pill costs?
During
- Is the treatment working? How are my blood counts and lymph nodes?
- Is this side effect a reason to lower my dose or switch drugs?
- Should I check my blood pressure at home?
- What should I do if I miss a dose?
- I have a surgery or dental visit coming up. Should I pause my pills?
- Will you check MRD, and what would the result mean?
- How long will I stay on this treatment?
- Are my antibody levels low? Would IVIG help me?
- Who do I call after hours, and when should I go to the emergency room?
- Is it safe to travel or be around grandchildren who just got vaccines?
After
- Now that fixed-duration treatment is done, how often will I have blood tests?
- What signs would mean my CLL is coming back?
- If it comes back, can I repeat the same treatment, or would I switch?
- Which vaccines should I get now, and when?
- How often should I have skin checks and other cancer screenings?
- What long-term side effects should I watch for?
- What can I do to lower my risk of infections?
- Are there support groups for people with CLL and their families?
- Would CAR-T or a clinical trial be options for me later?
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.