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Living with cancer· Appointment prep

Appointment sheet: Follicular lymphoma

One page to bring and write on: your details, the questions for Follicular 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

Follicular lymphoma

Prepared with OnCo (onco.cc/prep/follicular-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

17 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 t/BCL2, FLIPI / FLIPI2 / m7-FLIPI, PET-CTstaging and end-of-induction response, POD24, EZH2 mutation), 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?
Limited stage (I-II)
  1. 5.For my situation (limited stage (i-ii)), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Rituximab, and what side effects should I expect?
Advanced, low burden, asymptomatic
  1. 7.For my situation (advanced, low burden, asymptomatic), 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, high burden (GELF criteria)
  1. 9.For my situation (advanced, high burden (gelf criteria)), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Rituximab, Obinutuzumab, Bendamustine or related drugs, and what side effects should I expect?
Relapsed (≥2 lines)
  1. 11.For my situation (relapsed (≥2 lines)), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Mosunetuzumab, Epcoritamab, Axicabtagene ciloleucel or related drugs, and what side effects should I expect?
Any stage
  1. 13.Are there clinical trials I could join, for example of Epcoritamab, Mosunetuzumab, Odronextamab, Golcadomide?
  2. 14.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 15.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 16.I read that “Transformation to DLBCL cannot be predicted or prevented”. How does that affect my plan?
  5. 17.I read that “Sequencing bispecifics vs CAR-T”. How does that affect my plan?

The words I may hear

  • Deauville five-point scale: A 1-to-5 score for how bright a lymphoma looks on PET compared with the liver; 1-3 is considered a complete metabolic response.
  • Histologic transformation: When a lung adenocarcinoma escapes targeted therapy by turning into a different cell type, usually small-cell.
  • Lugano classification / Ann Arbor staging: The Lugano classification is the lymphoma staging system: stage I to IV by how many lymph node regions and organs are involved, with PET-based response criteria.

Tests and results to bring

Biomarker results to ask for: t(14;18)/BCL2, FLIPI / FLIPI2 / m7-FLIPI, PET-CT (Lugano) staging and end-of-induction response, POD24 (progression within 24 months), EZH2 mutation, ctDNA (investigational MRD).

Scans and tests linked to this cancer: Active surveillance, PET/CT.

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