The first 60 days: Cutaneous T-cell lymphoma (mycosis fungoides and Sezary syndrome)

Staging tests establish exactly what and where the cancer is. Everything else follows from the answers.

These specialties appear in the standard of care for this cancer. In most centres they meet weekly as a tumour board to agree each plan; you can ask when yours was discussed and what was decided.

• Medical oncologistNamed in the standard of care for: Early stage (patches and plaques), Advanced skin or blood disease, Refractory or transformed.
• Clinical oncologist (radiotherapy)Named in the standard of care for: Early stage (patches and plaques).
• Transplant and cell therapy teamNamed in the standard of care for: Refractory or transformed.
• Palliative and supportive care teamNamed in the standard of care for: Advanced skin or blood disease.

A second opinion from a centre that treats many similar cases is normal, not rude; the standard of care tells you what to compare it against.

Each row is a setting from the standard of care, in the order it usually arises. Not all will apply to you; your stage and biomarkers decide which do. The guideline grade, where recorded, says how strong the evidence is.

1. 1.Early stage (patches and plaques)

   Topical steroids, nitrogen mustard or bexarotene gel; narrowband UVB or PUVA phototherapy; local radiotherapy; total skin electron beam therapy for widespread disease.

   Total skin electron beam therapySuperficial and orthovoltage radiotherapy for skin cancerBexarotene
2. 2.Advanced skin or blood disease

   Extracorporeal photopheresis, interferon, oral bexarotene, low-dose methotrexate; mogamulizumab for blood involvement (MAVORIC); brentuximab vedotin for CD30-positive disease (ALCANZA); vorinostat or romidepsin.

   Methoxsalen (extracorporeal photopheresis)BexaroteneMethotrexateMogamulizumabBrentuximab vedotinVorinostatRomidepsin
3. 3.Refractory or transformed

   Gemcitabine or liposomal doxorubicin chemotherapy; allogeneic stem cell transplant in fit younger patients.

   GemcitabineAllogeneic stem cell transplantation

Generated from this cancer's standard of care, biomarkers and open problems. Take the group that matches where you are. To tick, add your own and print, open the one-page appointment sheet.

Trials open now for this cancer in OnCo, largest phase first. Joining a trial is a decision like any other: ask what the comparison arm is, whether a placebo is used, and what happens if you leave. The cancer page searches ClinicalTrials.gov live for more.

• A Phase IIa Clinical Study of Purinostat Mesylate for Injection in Patients With Peripheral T-Cell Lymphoma and Cutaneous T-Cell LymphomaPhase 2 · active · NCT06485219An Open-Label, Multicenter Phase IIa Clinical Study Evaluating the Safety, Tolerability, Pharmacokinetics, and Preliminary Efficacy of Purinostat Mesylate for Injection for the Treatment of Patients With Relapsed or Refractory Peripheral T-Cell Lymphoma and Cutaneous T-Cell Lymphoma
• Extracorporeal Photopheresis and Mogamulizumab for the Treatment of Erythrodermic Cutaneous T Cell LymphomaPhase 2 · recruiting · NCT04930653A Phase II Study of Combination Extracorporeal Photopheresis (ECP) and Mogamulizumab in Erythrodermic CTCL

Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.

• Free in oncologyFree testing, helplines, rides and lodging, second opinions and trial travel help, with who is eligible.
• Financial helpManufacturer programmes, national schemes and charities by country and product.
• Second opinionExpert centres for this cancer in your country and how referral works.

• Cutaneous T-cell lymphoma (mycosis fungoides and Sezary syndrome): the full pageCutaneous T-cell lymphoma is a family of nine lymphomas that start in the skin and mostly stay there, of which mycosis fungoides is by far the commonest. Most of them are long-term skin conditions managed over decades rather than cancers that are cured or not cured, and two of the nine are genuinely aggressive.
• One-page appointment sheetYour questions, the words you may hear, what to bring, and space for the answers. Print it.
• Treatment sequencingWhich treatment tends to follow which, line by line.
• NavigatorStandard of care for your stage, what you have tried, and trials near you.