Appointment sheet
Extranodal marginal zone lymphoma of mucosa-associated lymphoid tissue (MALT lymphoma)
Prepared with OnCo (onco.cc/prep/malt-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 browserWhat I know so far
What is unclear to me
Changes since last time
My questions
12 on the sheetNewly diagnosed
- 1.What is my exact diagnosis, stage, and grade, and which tests established them?
- 2.Which biomarkers have been tested on my tumour (for example Helicobacter pylori status, tAPI2-MALT1 translocation, Immunophenotype: CD20 positive, CD5 and CD10 negative, FDG avidity), and what were the results?
- 3.Which subtype is my cancer, and does that change the recommended treatment?
- 4.Is germline (inherited) genetic testing recommended for me or my family?
Gastric, H. pylori-positive
- 5.For my situation (gastric, h. pylori-positive), which of the standard options do you recommend and why?
Localised at other sites
- 6.For my situation (localised at other sites), which of the standard options do you recommend and why?
- 7.How do the results of FoRT apply to someone like me?
Disseminated or relapsed
- 8.For my situation (disseminated or relapsed), which of the standard options do you recommend and why?
- 9.Am I a candidate for Rituximab, Chlorambucil, Bendamustine or related drugs, and what side effects should I expect?
- 10.How do the results of AUGMENT and A Study of Zanubrutinib Plus Anti-CD20 Versus Lenalidomide Plus Rituximab in Participants With Relapsed/Refractory Follicular or Marginal Zone Lymphom apply to someone like me?
Any stage
- 11.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 12.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
Tests and results to bring
Biomarker results to ask for: Helicobacter pylori status (gastric), t(11;18) API2-MALT1 translocation, Immunophenotype: CD20 positive, CD5 and CD10 negative, FDG avidity (variable).
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Localised at other sites: Involved-site radiotherapy (the FoRT trial tested the dose in follicular and marginal zone lymphoma). (FoRT, Marginal zone lymphoma)
- Gastric, H. pylori-positive: H. pylori eradication first, with endoscopic follow-up; radiotherapy if the lymphoma persists. (Marginal zone lymphoma)
- Disseminated or relapsed: Rituximab alone or with chlorambucil or bendamustine; zanubrutinib or lenalidomide-rituximab later (AUGMENT; MAHOGANY). (Rituximab, Chlorambucil, Bendamustine, Zanubrutinib, Lenalidomide, AUGMENT, A Study of Zanubrutinib Plus Anti-CD20 Versus Lenalidomide Plus Rituximab in Participants With Relapsed/Refractory Follicular or Marginal Zone Lymphom)
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 browserWhat I was told
Agreed next steps, dates and who to call