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J's action sheet

Print and bring. Diagnosis 5 Oct 2026; sheet dated 7 Oct 2026. For discussion, not medical advice.

Ask at the next visit

  • KLL or SLL? Clonal B-cell count in blood? Stage (Binet/Rai)?
  • Is any iwCLL treatment criterion met? If not: written follow-up plan (aktiv exspektans).
  • Copies of the pathology report (PAD) and flow cytometry, with PAD numbers.
  • Reviewed by a haematopathologist (hematopatolog)? Large cells or accelerated features? How was mantle cell lymphoma excluded?
  • Which clinic owns my follow-up (hematologi or onkologi)? Still in SVF?
  • Named contact nurse (kontaktsjuksköterska / fast vårdkontakt); Min vårdplan activated.
  • FISH, TP53 sequencing, IGHV: now or before treatment? On which sample?
  • IgG/IgA/IgM and hepatitis B serology.

Second opinion (ny medicinsk bedömning, Patientlagen 8 kap. 1 §)

  • Remiss to a named CLL team (Karolinska or Uppsala), with PAD numbers and a slide-review request.
  • Remiss/Betalningsförbindelse marked "vård efter initiativ från Region Skåne", not "patientens eget val", or travel is not reimbursed.
  • Consent for the receiving clinic to read my records.

Records

  • Download notes, labs and X-ray reports (1177 Journalen).
  • Order PAD, flow, medication/diagnosis lists, images: Journalservice 0771-86 66 00 or the GDPR form.
  • Write a one-page timeline and a medicines/supplements list.

Vaccinations, before any treatment

  • PCV20 at the vårdcentral (free); ask whether PPV23 is also needed.
  • Influenza and COVID-19 from November (free).
  • Shingrix: given by the clinic? Otherwise self-paid (Skånelistan: ~1,600 kr/dose plus 200 kr fee per visit; prices vary).
  • RSV if 60 or older; TBE if in or near a risk area. No live vaccines.

If treatment is proposed

  • Which criterion is met? Recent TP53 and IGHV results?
  • Fixed duration (VO/AV) or continuous BTK inhibitor: why for me? Subsidised?
  • Eligible for CLL18/MOIRAI at Lund?
  • Pharmacist interaction check; vaccines finished at least 2 weeks before start.

Daily life

  • Keep training; pause during infection.
  • Call for fever of 38.0 °C or more, fast-growing nodes, drenching night sweats, weight loss, marked fatigue.
  • No St John's wort or high-dose herbal extracts without asking.
  • Sun protection, skin checks, cancer screening.

Contacts: Hematologimottagning Lund 046-17 71 41 · Malmö 040-33 34 00 · SUS 046-17 10 00 · Skånetrafiken utomlänsresor 0771-77 17 73 · Cancerlinjen 010-199 10 10 · Blodcancerförbundet 08-546 40 540