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Questions for the doctor

In priority order: what to ask now, what to ask before any treatment, and what can wait.

Ask now

Diagnosis and pathology

  1. Is my diagnosis CLL or SLL, under which classification, and what is my clonal B-cell count in blood? Could this be tissue-based MBL?
  2. If a lymph node was removed, what did the pathology report (PAD) show?
  3. Proliferation centres, and Ki-67 within them.
  4. Any large cells or Hodgkin-like cells.
  5. Any sign of accelerated CLL or transformation.
  6. How mantle cell lymphoma and other small-cell lymphomas were excluded.
  7. Did a haematopathologist review it, at Lund or elsewhere? May I have copies of the PAD and flow-cytometry reports, with the PAD numbers?

Stage and treatment indication

  1. What is my Binet/Rai stage, and how were any excised nodes counted?
  2. Is any iwCLL treatment criterion met now? If so, which one, and how was it documented?
  3. If not: how often will I be seen, which tests will be done, and which symptoms should make me call?

Organisation

  1. Which clinic and which named doctor own my follow-up: haematology or oncology? Am I still in the SVF pathway?
  2. Who is my contact nurse (kontaktsjuksköterska / fast vårdkontakt)? Can you activate Min vårdplan?

Second opinion

  1. If I ask for a second opinion (ny medicinsk bedömning) under Patientlagen 8 kap. 1 §, will you send the referral to a named CLL team at Karolinska or Uppsala? Please mark the Remiss/Betalningsförbindelse form as care on Region Skåne's initiative, include the PAD numbers, and ask whether they want to review the slides.

Immune status and vaccines

  1. Can we check quantitative IgG, IgA and IgM, and hepatitis B serology, now?
  2. Which pneumococcal schedule do you follow: one PCV20 dose (FoHM and Region Skåne) or PCV20 plus PPV23 (VP8.2)? Will the clinic give Shingrix as part of my care?

Ask before any treatment

Genetics

  1. Has FISH (del(17p), del(11q), +12, del(13q)) been done recently?
  2. Has TP53 been sequenced?
  3. What is the laboratory's detection limit, and was a VAF (variant allele frequency) reported?
  4. Which sample was used, given that this may be SLL: blood, marrow or node?
  5. What is my exact IGHV identity percentage, and does my CLL belong to a stereotyped subset? If the percentage is borderline, should it be confirmed at an ERIC-certified laboratory?

Work-up

  1. Will I need a bone-marrow examination and a CT? A CT is needed if venetoclax is considered.

Choosing a regimen

  1. Which options are realistic for my profile in Sweden: VO (venetoclax-obinutuzumab), AV (acalabrutinib-venetoclax), IV (ibrutinib-venetoclax), or continuous acalabrutinib or zanubrutinib? Which are subsidised for my biology?
  2. Fixed duration or continuous treatment for me: what would each mean for my daily life, given the risks of bleeding and atrial fibrillation, the infusions and the dose ramp-up?
  3. If a BTK inhibitor is proposed:
  4. Why this drug rather than another? BTK inhibitors are not interchangeable.
  5. Capsules or tablets, if I take acid-reducing medicine?
  6. What ECG, blood-pressure and echocardiography checks will I have?
  7. If VO is proposed: which start order will you use, obinutuzumab first (as in the SmPC and CLL14) or venetoclax first (VP8.2 §11.1)? Why?
  8. If my CLL has a TP53 aberration and AV is proposed: AMPLIFY excluded patients with TP53 aberrations, so what evidence supports AV for me?

Trials

  1. Am I eligible for CLL18/MOIRAI at Lund? Does Lund have open places, and would SLL with few circulating cells meet the flow-cytometry criterion?

Safety and supportive care

  1. What prophylaxis will I need: antivirals, Pneumocystis (PJP) prophylaxis, hepatitis B cover? Can vaccinations be finished at least 2 weeks before I start?
  2. Will a pharmacist review my medicines and supplements for interactions?

The longer view

  1. If my disease returns after each option, what remains: retreatment, BTK inhibitor, pirtobrutinib, trials, transplant?
  2. If a second opinion is under way, should we complete it before deciding?

Useful but not urgent

  1. Would testing IGHV now, to calculate IPS-E, help me understand my chance of needing treatment? It changes neither the indication nor the choice of treatment.
  2. Is a CLL-IPI score worth calculating, given that β2-microglobulin must be ordered separately and the score is of limited value with targeted therapy?
  3. Should I have a baseline skin examination or a dermatology referral?
  4. Can I be referred for cancer rehabilitation, a counsellor (kurator) or a rehabilitation coordinator (rehabiliteringskoordinator)?
  5. Should my household contacts get influenza and COVID-19 vaccines, and can they get them free of charge?
  6. Which other vaccines apply to me: RSV (if I am 60 or over), TBE (if I live in or near a risk area), hepatitis B, and a diphtheria–tetanus booster?
  7. Before travel: which destinations require yellow fever vaccination, and what should my insurance cover?
  8. Could my follow-up later move to primary care, and what criteria would send me back to haematology?
  9. How are my registry data and biobank samples used, and how can I restrict research use without the tissue being destroyed?
  10. What psychosocial support is there for the "watch, wait, worry" phase?