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Questions for the appointment, in priority order

MUST 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. What did the node pathology (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 the 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. I would like a new medical assessment (ny medicinsk bedömning) under PL 8 kap. 1 §. Will you send the referral to a named CLL team at Karolinska or Uppsala? Please mark the Remiss/Betalningsförbindelse 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?

Exercise

  1. Is there any reason, such as spleen size or platelet count, to limit contact or high-intensity sport now?

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 lab's detection limit, and was a VAF 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 subset? If it 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, AV, IV, 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 training, given bleeding, atrial fibrillation, infusions and the 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 I am TP53-aberrant and AV is proposed: AMPLIFY excluded TP53-aberrant patients, 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. Should we complete the second opinion 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 do they qualify for them free?
  6. Which other vaccines apply to me: RSV (if 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?