The first 60 days: Cutaneous T-cell lymphoma (mycosis fungoides and Sezary syndrome)
Mycosis fungoides is a lymphoma that lives in the skin, looking like eczema or psoriasis for years before it is diagnosed. It is treated with creams, light and skin-directed radiotherapy for as long as possible, then with antibodies such as mogamulizumab and brentuximab vedotin when it spreads to the blood or lymph nodes. Below, week by week, is what OnCo's record of Cutaneous T-cell lymphoma (mycosis fungoides and Sezary syndrome) says about the first two months: the order is typical, the timing is yours to ask about. Sections appear only where the record has something to say. Orientation, not medical advice.
What happens now
Staging tests establish exactly what and where the cancer is. Everything else follows from the answers.
Ask which of these were tested and what the results were; see the report reader for what each value means.
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.
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.
Topical steroids, nitrogen mustard or bexarotene gel; narrowband UVB or PUVA phototherapy; local radiotherapy; total skin electron beam therapy for widespread disease.
Extracorporeal photopheresis, interferon, oral bexarotene, low-dose methotrexate; mogamulizumab for blood involvement (MAVORIC); brentuximab vedotin for CD30-positive disease (ALCANZA); vorinostat or romidepsin.
Gemcitabine or liposomal doxorubicin chemotherapy; allogeneic stem cell transplant in fit younger patients.
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.
Newly diagnosed
- What is my exact diagnosis, stage, and grade, and which tests established them?Everything else follows from an accurate stage and subtype.
- 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?These results decide eligibility for targeted therapy, immunotherapy, and trials.
- Which subtype is my cancer, and does that change the recommended treatment?Recognised subtypes for this cancer include Mycosis fungoides, early stage, Mycosis fungoides, tumour stage and large-cell transformation, Folliculotropic mycosis fungoides.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Early stage (patches and plaques)
- For my situation (early stage (patches and plaques)), which of the standard options do you recommend and why?Guideline options include: Topical steroids, nitrogen mustard or bexarotene gel; narrowband UVB or PUVA phototherapy; local radiotherapy; total skin electron beam therapy for widespread disease.
- Am I a candidate for Bexarotene, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Advanced skin or blood disease
- For my situation (advanced skin or blood disease), which of the standard options do you recommend and why?Guideline options include: Extracorporeal photopheresis, interferon, oral bexarotene, low-dose methotrexate; mogamulizumab for blood involvement (MAVORIC); brentuximab vedotin for CD30-positive disease (ALCANZA); vorinostat or romidepsin.
- Am I a candidate for Methoxsalen (extracorporeal photopheresis), Bexarotene, Methotrexate or related drugs, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Refractory or transformed
- For my situation (refractory or transformed), which of the standard options do you recommend and why?Guideline options include: Gemcitabine or liposomal doxorubicin chemotherapy; allogeneic stem cell transplant in fit younger patients.
- Am I a candidate for Gemcitabine, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Any stage
- Are there clinical trials I could join, for example of Soligenix, Mogamulizumab?Trials are how the next standard of care is set; asking early keeps options open.
- Would a second opinion at a high-volume centre change anything, and can you help arrange it?Rare or high-stakes decisions benefit from a centre that treats many similar patients.
- What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?Supportive care improves quality of life and helps patients complete treatment.
- I read that “Diagnosis takes years because early disease mimics eczema”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “No cure without transplant”. How does that affect my plan?Open problems are where trials and second opinions matter most.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Cutaneous T-cell lymphoma (mycosis fungoides and Sezary syndrome): the full pageMycosis fungoides is a lymphoma that lives in the skin, looking like eczema or psoriasis for years before it is diagnosed. It is treated with creams, light and skin-directed radiotherapy for as long as possible, then with antibodies such as mogamulizumab and brentuximab vedotin when it spreads to the blood or lymph nodes.
- 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.