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Living with cancer· Appointment prep

Appointment sheet: Primary mediastinal (thymic) large B-cell lymphoma

One page to bring and write on: your details, the questions for Primary mediastinal (thymic) large B-cell 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 mediastinal (thymic) large B-cell lymphoma

Prepared with OnCo (onco.cc/prep/primary-mediastinal-b-cell-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

16 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 CD20, CD23, MAL and weak or partial CD30 expression, 9p24.1 gain or amplification, CIITA rearrangement and loss of MHC class II, End-of-treatment FDG PETto decide on radiotherapy, Circulating tumour DNA for response monitoring), 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?
First line
  1. 5.For my situation (first line), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Rituximab, Doxorubicin, Cyclophosphamide or related drugs, and what side effects should I expect?
  3. 7.How do the results of IELSG37 apply to someone like me?
Residual PET-positive disease after immunochemotherapy
  1. 8.For my situation (residual pet-positive disease after immunochemotherapy), which of the standard options do you recommend and why?
Relapsed or refractory
  1. 9.For my situation (relapsed or refractory), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Pembrolizumab, Nivolumab, Brentuximab vedotin or related drugs, and what side effects should I expect?
  3. 11.How do the results of KEYNOTE-170 apply to someone like me?
Any stage
  1. 12.Are there clinical trials I could join, for example of IELSG37, KEYNOTE-170, ctDNA monitoring in lymphoma (PhasED-seq, clonoSEQ), Glofitamab?
  2. 13.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 14.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 15.I read that “No validated way to identify the 10 to 15 percent who will fail first-line therapy before they do”. How does that affect my plan?
  5. 16.I read that “Checkpoint blockade in first line is untested in randomised trials”. How does that affect my plan?

The words I may hear

  • R-CHOP (lymphoma chemoimmunotherapy): R-CHOP is the standard first treatment for diffuse large B-cell lymphoma: rituximab (an antibody against CD20) plus four chemotherapy drugs (cyclophosphamide, doxorubicin, vincristine, prednisone), given every three weeks for six cycles with curative intent.
  • 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.
  • ICANS (neurotoxicity): ICANS is confusion, speech difficulty, and rarely seizures after CAR-T or bispecific therapy.
  • 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.
  • Cytokine release syndrome (CRS): A flood of inflammatory signals when immune cells are activated en masse, causing fever, low blood pressure, and sometimes organ failure.
  • Autologous stem cell transplant (ASCT): High-dose chemotherapy (melphalan in myeloma, BEAM in lymphoma) that would permanently destroy the bone marrow, made survivable by giving the patient back their own previously collected stem cells, which engraft in 10-14 days.

Tests and results to bring

Biomarker results to ask for: CD20, CD23, MAL and weak or partial CD30 expression, 9p24.1 gain or amplification (PD-L1, PD-L2, JAK2), CIITA rearrangement and loss of MHC class II, End-of-treatment FDG PET (Deauville score) to decide on radiotherapy, Circulating tumour DNA for response monitoring (under study).

Scans and tests linked to this cancer: FDG PET, PET-adapted (response-adapted) therapy, ctDNA monitoring in lymphoma (PhasED-seq, clonoSEQ).

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