Appointment sheet
Splenic marginal zone lymphoma
Prepared with OnCo (onco.cc/prep/splenic-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 browserWhat I know so far
What is unclear to me
Changes since last time
My questions
10 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 Villous lymphocytes and marrow intrasinusoidal infiltration, NOTCH2, KLF2 and TP53 mutations, Hepatitis C serology, Immunophenotype: CD20 positive, CD5, CD10, CD103 and annexin A1 negative), 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?
Asymptomatic
- 5.For my situation (asymptomatic), which of the standard options do you recommend and why?
Symptomatic
- 6.For my situation (symptomatic), which of the standard options do you recommend and why?
- 7.Am I a candidate for Rituximab, Bendamustine, Zanubrutinib or related drugs, and what side effects should I expect?
- 8.How do the results of AUGMENT apply to someone like me?
Any stage
- 9.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 10.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: Villous lymphocytes and marrow intrasinusoidal infiltration, NOTCH2, KLF2 and TP53 mutations, Hepatitis C serology, Immunophenotype: CD20 positive, CD5, CD10, CD103 and annexin A1 negative.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Asymptomatic: Watch and wait; antiviral therapy first if hepatitis C is present. (Marginal zone lymphoma)
- Symptomatic: Rituximab alone or with chemotherapy; splenectomy for selected patients; BTK inhibitors or lenalidomide-rituximab later. (Rituximab, Bendamustine, Zanubrutinib, Lenalidomide, AUGMENT)
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