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Living with cancer· Appointment prep

Appointment sheet: Cutaneous T-cell lymphoma (mycosis fungoides and Sezary syndrome)

One page to bring and write on: your details, the questions for Cutaneous T-cell lymphoma (mycosis fungoides and Sezary syndrome) 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

Cutaneous T-cell lymphoma (mycosis fungoides and Sezary syndrome)

Prepared with OnCo (onco.cc/prep/cutaneous-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

15 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 Stage, CD30 expression, CCR4 expression and blood involvement, Large-cell transformation on biopsy, T-cell receptor clonality in skin and blood), 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?
Early stage (patches and plaques)
  1. 5.For my situation (early stage (patches and plaques)), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Bexarotene, and what side effects should I expect?
Advanced skin or blood disease
  1. 7.For my situation (advanced skin or blood disease), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Methoxsalen (extracorporeal photopheresis), Bexarotene, Methotrexate or related drugs, and what side effects should I expect?
Refractory or transformed
  1. 9.For my situation (refractory or transformed), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Gemcitabine, and what side effects should I expect?
Any stage
  1. 11.Are there clinical trials I could join, for example of Soligenix, Mogamulizumab?
  2. 12.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 13.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 14.I read that “Diagnosis takes years because early disease mimics eczema”. How does that affect my plan?
  5. 15.I read that “No cure without transplant”. How does that affect my plan?

Tests and results to bring

Biomarker results to ask for: Stage (skin, node, blood, viscera), CD30 expression (brentuximab vedotin), CCR4 expression and blood involvement (mogamulizumab), Large-cell transformation on biopsy, T-cell receptor clonality in skin and blood.

Scans and tests linked to this cancer: Confocal microscopy and optical coherence tomography for skin (VivaScope, VivoSight, deepLive).

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