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Living with cancer· Appointment prep

Appointment sheet: Hodgkin lymphoma

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

Hodgkin lymphoma

Prepared with OnCo (onco.cc/prep/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

31 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 Interim PET, CD30, PD-L1, Interim PETafter cycle 2, CD30 and CD15 on Reed-Sternberg cells; CD20 in NLPBL), 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?
Advanced stage
  1. 5.For my situation (advanced stage), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Nivolumab, Brentuximab vedotin, and what side effects should I expect?
Early stage, favourable (I-II)
  1. 7.For my situation (early stage, favourable (i-ii)), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Doxorubicin, and what side effects should I expect?
  3. 9.How do the results of AHOD2131 (COG / NCTN) apply to someone like me?
Early stage, unfavourable (I-II bulky or risk factors)
  1. 10.For my situation (early stage, unfavourable (i-ii bulky or risk factors)), which of the standard options do you recommend and why?
  2. 11.Am I a candidate for Doxorubicin, and what side effects should I expect?
Advanced stage (III-IV), age ≤60
  1. 12.For my situation (advanced stage (iii-iv), age ≤60), which of the standard options do you recommend and why?
  2. 13.Am I a candidate for Nivolumab, Brentuximab vedotin, and what side effects should I expect?
  3. 14.How do the results of SWOG S1826 and ECHELON-1 apply to someone like me?
Advanced stage, age >60
  1. 15.For my situation (advanced stage, age >60), which of the standard options do you recommend and why?
  2. 16.Am I a candidate for Nivolumab, Brentuximab vedotin, and what side effects should I expect?
  3. 17.How do the results of SWOG S1826 apply to someone like me?
First relapse, transplant-eligible
  1. 18.For my situation (first relapse, transplant-eligible), which of the standard options do you recommend and why?
  2. 19.Am I a candidate for Brentuximab vedotin, Nivolumab, Pembrolizumab, and what side effects should I expect?
  3. 20.How do the results of AETHERA apply to someone like me?
Relapse after transplant or transplant-ineligible
  1. 21.For my situation (relapse after transplant or transplant-ineligible), which of the standard options do you recommend and why?
  2. 22.Am I a candidate for Pembrolizumab, Nivolumab, Brentuximab vedotin, and what side effects should I expect?
  3. 23.How do the results of KEYNOTE-204 and CheckMate 205 apply to someone like me?
Paediatric (COG / EuroNet)
  1. 24.For my situation (paediatric (cog / euronet)), which of the standard options do you recommend and why?
  2. 25.Am I a candidate for Brentuximab vedotin, and what side effects should I expect?
Survivorship
  1. 26.For my situation (survivorship), which of the standard options do you recommend and why?
Any stage
  1. 27.Are there clinical trials I could join, for example of Abexinostat, MK-1045, Cobolimab, Rondecabtagene autoleucel?
  2. 28.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 29.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 30.I read that “Late toxicity in survivors”. How does that affect my plan?
  5. 31.I read that “Older patients”. 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.
  • Overall survival (OS): Overall survival (OS) is how long patients live, full stop.
  • Progression-free survival (PFS): Progression-free survival (PFS) is how long patients live without their cancer growing.
  • Deauville score and PET-adapted therapy: A 1-to-5 scale for how brightly a lymphoma lights up on a PET scan, compared with the liver and the middle of the chest.
  • 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.
  • Second cancers after radiotherapy: Radiotherapy can itself cause a new cancer in the treated area, typically ten to thirty years later.
  • 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.
  • Deep inspiration breath-hold (DIBH): Taking and holding a deep breath during each radiation beam.
  • 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: Interim PET (Deauville), CD30, PD-L1 (9p24.1 amplification), Interim PET (Deauville score) after cycle 2, CD30 and CD15 on Reed-Sternberg cells; CD20 in NLPBL, 9p24.1 (PD-L1/PD-L2) amplification, EBV status (EBER), International Prognostic Score (IPS), Baseline metabolic tumour volume, ctDNA (research; PhasED-seq), Soluble CD30 (research).

Scans and tests linked to this cancer: FDG PET, Mammography & tomosynthesis, PET-adapted (response-adapted) therapy, Quantitative imaging biomarkers (RECIST, PERCIST, SUV, ADC), Strain echocardiography (global longitudinal strain), Troponin and natriuretic peptide monitoring during cancer treatment.

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