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Living with cancer· Appointment prep

Appointment sheet: Advanced-stage classical Hodgkin lymphoma (stage III to IV)

One page to bring and write on: your details, the questions for Advanced-stage classical Hodgkin lymphoma (stage III to IV) 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

Advanced-stage classical Hodgkin lymphoma (stage III to IV)

Prepared with OnCo (onco.cc/prep/advanced-stage-classical-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

22 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 International Prognostic Score, Interim FDG-PET after cycle two, Baseline metabolic tumour volume, CD30 expression, 9p24.1 amplification and PD-L1 expression), 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?
Staging and risk
  1. 5.For my situation (staging and risk), which of the standard options do you recommend and why?
First line, adults and adolescents 12 and over
  1. 6.For my situation (first line, adults and adolescents 12 and over), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Nivolumab, Brentuximab vedotin, Doxorubicin or related drugs, and what side effects should I expect?
  3. 8.How do the results of SWOG S1826 and ECHELON-1 apply to someone like me?
First line, intensive European option
  1. 9.For my situation (first line, intensive european option), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Brentuximab vedotin, and what side effects should I expect?
  3. 11.How do the results of GHSG HD21 apply to someone like me?
Children
  1. 12.For my situation (children), which of the standard options do you recommend and why?
  2. 13.Am I a candidate for Brentuximab vedotin, and what side effects should I expect?
  3. 14.How do the results of A Study of Brentuximab Vedotin + Adriamycin, Vinblastine, and Dacarbazine in Pediatric Participants With Advanced Stage Newly Diagnosed Hodgkin Lymphoma apply to someone like me?
Older or frail patients
  1. 15.For my situation (older or frail patients), which of the standard options do you recommend and why?
  2. 16.Am I a candidate for Brentuximab vedotin, Nivolumab, Doxorubicin, and what side effects should I expect?
End of treatment
  1. 17.For my situation (end of treatment), which of the standard options do you recommend and why?
Any stage
  1. 18.Are there clinical trials I could join, for example of SWOG S1826, GHSG HD21, A Study of Brentuximab Vedotin + Adriamycin, Vinblastine, and Dacarbazine in Pediatric Participants With Advanced Stage Newly Diagnosed Hodgkin Lymphoma, PD-1 blockade + AVD chemotherapy?
  2. 19.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 20.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 21.I read that “Long-term outcomes of nivolumab-AVD beyond a few years are not yet known”. How does that affect my plan?
  5. 22.I read that “Nivolumab-AVD and BrECADD have never been compared”. 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).
  • Reed-Sternberg cell: The Reed-Sternberg cell is the giant, often two-nucleus cancer cell of Hodgkin lymphoma; it makes up only about 1% of the tumour, and the rest is immune cells it has recruited.
  • 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.
  • 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.
  • Late effects and survivorship toxicity: Health problems appearing months or decades after treatment ends: heart damage, infertility, second cancers, lymphoedema, dry mouth, memory problems, weak bones.

Tests and results to bring

Staging and risk: FDG-PET/CT with Lugano staging, International Prognostic Score, fertility counselling and cardiac and pulmonary baselines.

Biomarker results to ask for: International Prognostic Score (IPS 0 to 7), Interim FDG-PET after cycle two (Deauville score, RATHL and HD18 escalation or de-escalation), Baseline metabolic tumour volume, CD30 expression (universal; brentuximab target), 9p24.1 amplification and PD-L1 expression (PD-1 responsiveness), Circulating tumour DNA (research).

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