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Living with cancer· Appointment prep

Appointment sheet: Waldenström macroglobulinaemia

One page to bring and write on: your details, the questions for Waldenström macroglobulinaemia plus your own, the words you may hear, what to bring, the treatments the standard of care names, and room for the answers and agreed next steps. What you type stays in this browser. Print it or save it as a PDF. New to all this? Start with the first 60 days. Orientation, not medical advice.

Tick the questions to print

All of this cancer's questions start ticked. Untick what does not apply; ticks are kept in this browser. .

Your own questions

Shared with the prep pack, so questions you add there appear here too.

Print or save as PDF

Use (or Ctrl+P, Cmd+P on a Mac). To keep a copy, choose Save as PDF as the destination in the print dialog. Only the sheet prints; the controls stay on screen. Your typed notes print where you typed them; empty fields print as ruled lines to write on.

Appointment sheet

Waldenström macroglobulinaemia

Prepared with OnCo (onco.cc/prep/waldenstrom/). Orientation, not medical advice; your team knows your case.

My details

Name
Date of appointment
Hospital and clinician
Who is coming with me

What I know, what is unclear, changes to discuss

Saved in this browser
What I know so far
What is unclear to me
Changes since last time

My questions

14 on the sheet
Newly diagnosed
  1. 1.What is my exact diagnosis, stage, and grade, and which tests established them?
  2. 2.Which biomarkers have been tested on my tumour (for example MYD88 L265P, CXCR4 mutation, Serum IgM and viscosity, IPSSWM / rIPSSWM, Anti-MAG antibodies), and what were the results?
  3. 3.Which subtype is my cancer, and does that change the recommended treatment?
  4. 4.Is germline (inherited) genetic testing recommended for me or my family?
Asymptomatic
  1. 5.For my situation (asymptomatic), which of the standard options do you recommend and why?
Symptomatic, first line
  1. 6.For my situation (symptomatic, first line), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Bendamustine, Rituximab, Zanubrutinib or related drugs, and what side effects should I expect?
Relapsed
  1. 8.For my situation (relapsed), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Bortezomib, Carfilzomib, Venetoclax or related drugs, and what side effects should I expect?
Any stage
  1. 10.Are there clinical trials I could join, for example of Pirtobrutinib, Venetoclax, Zanubrutinib?
  2. 11.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 12.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 13.I read that “Indefinite BTKi therapy: cost, toxicity and resistance (BTK C481S)”. How does that affect my plan?
  5. 14.I read that “CXCR4-mutant disease responds slower and shallower”. How does that affect my plan?

The words I may hear

  • IGHV mutational status: Whether the leukaemia's antibody gene has been 'edited' by the immune system.
  • Histologic transformation: When a lung adenocarcinoma escapes targeted therapy by turning into a different cell type, usually small-cell.

Tests and results to bring

Biomarker results to ask for: MYD88 L265P (AS-PCR/NGS), CXCR4 mutation (S338X and others), Serum IgM and viscosity, IPSSWM / rIPSSWM, Anti-MAG antibodies (neuropathy), Cryoglobulins, cold agglutinins.

Scans and tests linked to this cancer: Active surveillance.

Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.

The treatments I may be offered

From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.

Answers and next steps

Saved in this browser
What I was told
Agreed next steps, dates and who to call