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Living with cancer· Appointment prep

Appointment sheet: Nodular lymphocyte-predominant Hodgkin lymphoma (nodular lymphocyte-predominant B-cell lymphoma)

One page to bring and write on: your details, the questions for Nodular lymphocyte-predominant Hodgkin lymphoma (nodular lymphocyte-predominant 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

Nodular lymphocyte-predominant Hodgkin lymphoma (nodular lymphocyte-predominant B-cell lymphoma)

Prepared with OnCo (onco.cc/prep/nodular-lymphocyte-predominant-hodgkin-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 CD20-positive, CD30- and CD15-negative LP cells with OCT2 and PAX5 expression, Fan growth patternon the biopsy, Absence of EBV, Stage and number of nodal sites, Lactate dehydrogenase and B symptoms), 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?
Diagnosis
  1. 5.For my situation (diagnosis), which of the standard options do you recommend and why?
Stage IA without risk factors
  1. 6.For my situation (stage ia without risk factors), which of the standard options do you recommend and why?
Stage IB to IV
  1. 7.For my situation (stage ib to iv), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Rituximab, Doxorubicin, Cyclophosphamide or related drugs, and what side effects should I expect?
Relapse
  1. 9.For my situation (relapse), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Rituximab, and what side effects should I expect?
Transformation
  1. 11.For my situation (transformation), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Rituximab, and what side effects should I expect?
Any stage
  1. 13.Are there clinical trials I could join, for example of Rituximab?
  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 “No randomised trial has compared ABVD with rituximab-based chemotherapy”. How does that affect my plan?
  5. 17.I read that “Variant growth patterns are hard to reproduce between pathologists”. How does that affect my plan?

The words I may hear

  • ABVD, BEACOPP and BrECADD (Hodgkin lymphoma regimens): The chemotherapy recipes that cure most Hodgkin lymphoma: ABVD (four drugs, the long-standing standard), the more intensive German BEACOPP, and newer versions that replace bleomycin with brentuximab vedotin (A+AVD) or add nivolumab (N-AVD).
  • Lymphoma (tissue type): Cancer of lymphocytes, the white blood cells of the immune system, usually growing as masses in lymph nodes, spleen or other organs.
  • 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.
  • 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

Diagnosis: Excisional node biopsy with expert haematopathology review to distinguish from classical Hodgkin lymphoma and T-cell/histiocyte-rich large B-cell lymphoma; FDG-PET/CT staging.

Biomarker results to ask for: CD20-positive, CD30- and CD15-negative LP cells with OCT2 and PAX5 expression, Fan growth pattern (A to F) on the biopsy, Absence of EBV, Stage and number of nodal sites, Lactate dehydrogenase and B symptoms (transformation suspicion), FDG-PET (staging; avid).

Scans and tests linked to this cancer: Active surveillance, FDG PET, Histopathology & immunohistochemistry.

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