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Living with cancer· Appointment prep

Appointment sheet: Peripheral T-cell lymphomas (including cutaneous T-cell lymphoma)

One page to bring and write on: your details, the questions for Peripheral T-cell lymphomas (including cutaneous T-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

Peripheral T-cell lymphomas (including cutaneous T-cell lymphoma)

Prepared with OnCo (onco.cc/prep/peripheral-t-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

19 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 CD30 expression, ALK rearrangement, TFH markersand RHOA G17V / TET2 / IDH2 R172, EBV DNA, HTLV-1 serology), 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, CD30+ PTCL / ALCL
  1. 5.For my situation (first line, cd30+ ptcl / alcl), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Brentuximab vedotin, and what side effects should I expect?
First line, other nodal PTCL
  1. 7.For my situation (first line, other nodal ptcl), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Doxorubicin, Cyclophosphamide, Vincristine, and what side effects should I expect?
Relapsed/refractory PTCL
  1. 9.For my situation (relapsed/refractory ptcl), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Pralatrexate, Belinostat, Romidepsin or related drugs, and what side effects should I expect?
Mycosis fungoides / Sézary
  1. 11.For my situation (mycosis fungoides / sézary), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Mogamulizumab, Brentuximab vedotin, and what side effects should I expect?
Extranodal NK/T-cell
  1. 13.For my situation (extranodal nk/t-cell), which of the standard options do you recommend and why?
  2. 14.Am I a candidate for Pembrolizumab, and what side effects should I expect?
Any stage
  1. 15.Are there clinical trials I could join, for example of Brentuximab vedotin, Azacitidine, Allogeneic stem cell transplantation, Soquelitinib?
  2. 16.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 17.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 18.I read that “Five-year survival under 40% for PTCL-NOS with no new first-line regimen for non-CD30 disease”. How does that affect my plan?
  5. 19.I read that “Randomised evidence for transplant consolidation is lacking”. How does that affect my plan?

The words I may hear

  • Histologic transformation: When a lung adenocarcinoma escapes targeted therapy by turning into a different cell type, usually small-cell.
  • 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

Biomarker results to ask for: CD30 expression (brentuximab), ALK rearrangement, TFH markers (PD-1, CXCL13, ICOS) and RHOA G17V / TET2 / IDH2 R172, EBV DNA (NK/T-cell), HTLV-1 serology, CCR4 (mogamulizumab), TCR clonality.

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