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Living with cancer· Appointment prep

Appointment sheet: Primary CNS lymphoma

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

Primary CNS lymphoma

Prepared with OnCo (onco.cc/prep/primary-cns-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 MYD88 L265P and CD79B mutations, CSF cytology and flow cytometry, IL-10 in CSF/vitreous, MSKCC and IELSG prognostic scores, Slit-lamp examination for ocular involvement), 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?
Newly diagnosed, fit (<65-70)
  1. 5.For my situation (newly diagnosed, fit (<65-70)), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Methotrexate, Rituximab, and what side effects should I expect?
Newly diagnosed, older/unfit
  1. 7.For my situation (newly diagnosed, older/unfit), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Methotrexate, Temozolomide, Rituximab or related drugs, and what side effects should I expect?
Relapsed/refractory
  1. 9.For my situation (relapsed/refractory), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Ibrutinib, Lenalidomide, Axicabtagene ciloleucel or related drugs, and what side effects should I expect?
Any stage
  1. 11.Are there clinical trials I could join, for example of Ibrutinib, Axicabtagene ciloleucel, Lenalidomide, Zamtocabtagene autoleucel?
  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 “Most patients are over 65 and cannot tolerate curative-intent therapy”. How does that affect my plan?
  5. 15.I read that “Neurocognitive decline from disease and therapy”. How does that affect my plan?

The words I may hear

  • Cell of origin (GCB vs ABC): Whether a large B-cell lymphoma resembles a germinal-centre B cell or an activated B cell; the activated type does worse and depends on different pathways.
  • Blood-brain barrier (BBB): The tight seal around brain blood vessels that keeps most drugs out, one of the two main reasons brain cancer is so hard to treat.

Tests and results to bring

Newly diagnosed, fit (<65-70): Rituximab + high-dose methotrexate + cytarabine ± thiotepa (MATRix) ×4, then high-dose thiotepa-based chemotherapy with autologous transplant (IELSG32, IELSG43).

Newly diagnosed, older/unfit: High-dose methotrexate with temozolomide, procarbazine or rituximab (e.g. MT-R, R-MP), then maintenance (temozolomide, lenalidomide) or reduced-dose WBRT; ibrutinib-based induction in trials.

Biomarker results to ask for: MYD88 L265P and CD79B mutations (tissue and CSF ctDNA), CSF cytology and flow cytometry, IL-10 in CSF/vitreous, MSKCC and IELSG prognostic scores (age, performance status), Slit-lamp examination for ocular involvement.

Scans and tests linked to this cancer: Liquid biopsy (ctDNA), MRI.

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

The treatments I may be offered

  • Relapsed/refractory: Re-induction with methotrexate if durable first remission; ibrutinib, lenalidomide-rituximab, high-dose chemotherapy/ASCT if not done, WBRT; CD19 CAR-T and PD-1 inhibitors in trials or off-label. (Ibrutinib, Lenalidomide, Axicabtagene ciloleucel, Nivolumab)

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