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Living with cancer· Appointment prep

Appointment sheet: Marginal zone lymphoma

One page to bring and write on: your details, the questions for Marginal zone lymphoma 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

Marginal zone lymphoma

Prepared with OnCo (onco.cc/prep/marginal-zone-lymphoma/). 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

15 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 Helicobacter pylori status, tMALT1 translocation, Hepatitis C serology, MYD88 wild-type, Plasmacytic differentiation and paraprotein), 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?
Gastric MALT lymphoma, H. pylori-positive
  1. 5.For my situation (gastric malt lymphoma, h. pylori-positive), which of the standard options do you recommend and why?
Localised extranodal disease
  1. 6.For my situation (localised extranodal disease), which of the standard options do you recommend and why?
Splenic marginal zone lymphoma
  1. 7.For my situation (splenic marginal zone lymphoma), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Rituximab, and what side effects should I expect?
Advanced or relapsed
  1. 9.For my situation (advanced or relapsed), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Rituximab, Bendamustine, Chlorambucil or related drugs, and what side effects should I expect?
Any stage
  1. 11.Are there clinical trials I could join, for example of Zanubrutinib, Lenalidomide?
  2. 12.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 13.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 14.I read that “Transformation to diffuse large B-cell lymphoma in a minority”. How does that affect my plan?
  5. 15.I read that “No standard sequence of therapies is proven by randomised trials”. How does that affect my plan?

Tests and results to bring

Biomarker results to ask for: Helicobacter pylori status (gastric MALT), t(11;18) MALT1 translocation (predicts failure of eradication therapy), Hepatitis C serology (splenic), MYD88 wild-type (distinguishes from Waldenstrom), Plasmacytic differentiation and paraprotein.

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