Appointment sheet
Sezary syndrome
Prepared with OnCo (onco.cc/prep/sezary-syndrome/). 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 browserWhat I know so far
What is unclear to me
Changes since last time
My questions
11 on the sheetNewly diagnosed
- 1.What is my exact diagnosis, stage, and grade, and which tests established them?
- 2.Which biomarkers have been tested on my tumour (for example Sezary cell count of 1,000 per microlitre or more, or CD4:CD8 ratio of 10 or more with loss of CD7 or CD26, Clonal T-cell receptor rearrangement matching in skin and blood, CCR4 expression, CD30 expression), and what were the results?
- 3.Which subtype is my cancer, and does that change the recommended treatment?
- 4.Is germline (inherited) genetic testing recommended for me or my family?
First-line systemic
- 5.For my situation (first-line systemic), which of the standard options do you recommend and why?
- 6.Am I a candidate for Methoxsalen (extracorporeal photopheresis), Bexarotene, Interferon alfa-2a/2b, and what side effects should I expect?
Later lines
- 7.For my situation (later lines), which of the standard options do you recommend and why?
- 8.Am I a candidate for Mogamulizumab, Methotrexate, Pralatrexate or related drugs, and what side effects should I expect?
- 9.How do the results of MAVORIC apply to someone like me?
Any stage
- 10.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 11.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
The words I may hear
- Allogeneic stem cell transplant (allo-SCT): Replacing a patient's blood system with a donor's: chemotherapy wipes out the marrow, donor stem cells rebuild it, and the donor's immune cells hunt down leftover leukaemia.
Tests and results to bring
Biomarker results to ask for: Sezary cell count of 1,000 per microlitre or more, or CD4:CD8 ratio of 10 or more with loss of CD7 or CD26, Clonal T-cell receptor rearrangement matching in skin and blood, CCR4 expression (mogamulizumab target), CD30 expression (brentuximab vedotin).
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- First-line systemic: Extracorporeal photopheresis with or without interferon or bexarotene (EORTC 2023). (Methoxsalen (extracorporeal photopheresis), Bexarotene, Interferon alfa-2a/2b, Cutaneous T-cell lymphoma (mycosis fungoides and Sezary syndrome))
- Later lines: Mogamulizumab (MAVORIC), methotrexate, pralatrexate, brentuximab vedotin for CD30-positive disease, romidepsin or vorinostat; allogeneic transplant for fit responders. (Mogamulizumab, MAVORIC, Methotrexate, Pralatrexate, Brentuximab vedotin, Romidepsin, Vorinostat, Allogeneic stem cell transplant (allo-SCT))
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 browserWhat I was told
Agreed next steps, dates and who to call