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Living with cancer· Appointment prep

Appointment sheet: Relapsed and refractory classical Hodgkin lymphoma

One page to bring and write on: your details, the questions for Relapsed and refractory classical 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

Relapsed and refractory classical Hodgkin lymphoma

Prepared with OnCo (onco.cc/prep/relapsed-refractory-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 PET-negative remission before transplant, Time to relapseand primary refractory status, Extranodal disease, B symptoms and prior lines, 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?
Salvage before transplant
  1. 5.For my situation (salvage before transplant), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Brentuximab vedotin, Nivolumab, Pembrolizumab or related drugs, and what side effects should I expect?
Consolidation
  1. 7.For my situation (consolidation), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Brentuximab vedotin, and what side effects should I expect?
  3. 9.How do the results of AETHERA apply to someone like me?
Relapse after transplant
  1. 10.For my situation (relapse after transplant), which of the standard options do you recommend and why?
  2. 11.Am I a candidate for Pembrolizumab, Nivolumab, Brentuximab vedotin or related drugs, and what side effects should I expect?
  3. 12.How do the results of KEYNOTE-204 and CheckMate 205 apply to someone like me?
Failure of PD-1 antibodies and brentuximab
  1. 13.For my situation (failure of pd-1 antibodies and brentuximab), which of the standard options do you recommend and why?
  2. 14.Am I a candidate for Gemcitabine, Everolimus, and what side effects should I expect?
  3. 15.How do the results of Phase 2 Study Evaluating Autologous CD30.CAR-T Cells in Patients With Relapsed/Refractory Hodgkin Lymphoma (CHARIOT) apply to someone like me?
Transplant-ineligible patients
  1. 16.For my situation (transplant-ineligible patients), which of the standard options do you recommend and why?
  2. 17.Am I a candidate for Nivolumab, Brentuximab vedotin, and what side effects should I expect?
Any stage
  1. 18.Are there clinical trials I could join, for example of Phase 2 Study Evaluating Autologous CD30.CAR-T Cells in Patients With Relapsed/Refractory Hodgkin Lymphoma (CHARIOT), CD30 CAR-T for multiply relapsed Hodgkin lymphoma, Brentuximab vedotin, Pembrolizumab?
  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 “Which patients in complete remission after immunotherapy salvage can safely skip transplantation is unproven”. How does that affect my plan?
  5. 22.I read that “Salvage for patients already exposed to brentuximab and PD-1 antibodies in first line is undefined”. How does that affect my plan?

The words I may hear

  • 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.
  • 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

Biomarker results to ask for: PET-negative remission before transplant (Deauville 1 to 3; strongest predictor of cure), Time to relapse (under or over twelve months) and primary refractory status, Extranodal disease, B symptoms and prior lines (AETHERA high-risk criteria), CD30 expression (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, 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