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Patient handout

Cutaneous T-cell lymphoma — mycosis fungoides & Sézary syndrome (dermatology lens)

PRODUCTION

1. Your condition

This handout is for cutaneous t-cell lymphoma — mycosis fungoides & sézary syndrome (dermatology lens). Your care team identified this based on: adult with a fixed, persistent "eczema" or "psoriasis" that never truly clears despite adequate therapy — the canonical ctcl misdiagnosis, routed in from derm.atopic-dermatitis / derm.psoriasis (iscl/eortc pmid 17540844; eortc 2023 pmid 37890355).

Other reasons your team may use this plan: fixed, non-sun-exposed "bathing-trunk"-distributed scaly patches/plaques with poikiloderma (atrophy, telangiectasia, dyspigmentation) — classic patch/plaque-stage mycosis fungoides (iscl/eortc pmid 17540844); new cutaneous tumour(s) / ulcerated nodule arising in long-standing patch–plaque disease — tumour-stage (t3) or large-cell transformation (agar pmid 20855822); erythroderma (>80% bsa) with intractable pruritus, ectropion, alopecia, keratoderma, lymphadenopathy — erythrodermic mf / sézary syndrome screen (iscl/eortc pmid 17540844).

2. Your medications

Take these medications exactly as prescribed. Do not stop or change a dose without talking to your provider.

MedicationStarting doseHowWhenWhat it does
triamcinolone acetonide0.1% cream/ointmenttopicalBID to lesionsEORTC 2023 (PMID 37890355) — topical corticosteroids are a first-line skin-directed option for early-stage MF; potency matched to lesion thickness/site. NOTE: hold ≥2 wk before any diagnostic/repeat biopsy (steroids blunt the epidermotropic infiltrate).
clobetasol propionate0.05% ointmenttopicalBID short courseEORTC 2023 (PMID 37890355) — superpotent topical corticosteroid for thick/indurated plaques as skin-directed control; same pre-biopsy washout caveat.
mechlorethamine0.016% gel (chlormethine)topicalonce daily to affected skinEORTC 2023 (PMID 37890355) — topical chlormethine (nitrogen-mustard) gel is a first-line skin-directed therapy for early-stage MF; main adverse effect is cutaneous (allergic/irritant) contact dermatitis.
bexarotene (topical)1% geltopicalapplied to localised lesions, titratedEORTC 2023 (PMID 37890355) — topical bexarotene gel is a skin-directed option for localised early-stage MF lesions; local irritation common.
narrowband_uvb_or_puva_phototherapyEORTC 2023 (PMID 37890355) — phototherapy is a first-line skin-directed therapy: nbUVB for patch/thin-plaque disease, PUVA for thicker plaques / deeper involvement; durable responses in early-stage MF.
localized_radiotherapyEORTC 2023 (PMID 37890355) — MF is exquisitely radiosensitive; localized (spot) radiotherapy is highly effective for unilesional / localized refractory disease and palliation of individual tumours.

Plan: Cutaneous T-cell lymphoma (MF/SS) — stage-directed ladder (ISCL/EORTC + EORTC 2023; advanced/systemic routed to hematology-oncology)

3. When to call your provider

Contact your care team if any of the following happen:

  • Erythrodermic MF / Sézary with skin failure (thermoregulatory/fluid compromise) → admit + systemic therapy + infection management (EORTC 2023 PMID 37890355)
  • Secondary Staphylococcus aureus sepsis → urgent anti-staphylococcal therapy + sepsis pathway (leading cause of death in advanced disease)
  • Large-cell transformation / rapid tumour progression → urgent heme-onc + re-biopsy + restage (Agar PMID 20855822)
  • Adult "eczema/psoriasis" resistant to adequate therapy >6–12 mo or atypical → re-biopsy for MF before continued chronic immunosuppression (ISCL/EORTC PMID 17540844)

4. When to seek emergency care

Call 911 or go to the nearest emergency room right away if you have:

  • Erythrodermic MF / Sézary syndrome (>80% confluent erythema) with skin failure — thermoregulatory/fluid compromise, exfoliation, ± secondary sepsis (ISCL/EORTC PMID 17540844; EORTC 2023 PMID 37890355)(life-threatening)
  • Honey-crust/pustules/weeping with fever or sepsis features on MF/SS skin — Staphylococcus aureus superinfection/bacteraemia (EORTC 2023 PMID 37890355)(life-threatening)
  • Rapidly growing/ulcerated tumour or accelerated progression in established MF — suspected large-cell transformation (CD30± large cells >25%) (Agar PMID 20855822)
  • Tumour-stage (IIB), nodal/visceral (IVA–B), or blood-B2/Sézary disease on staging (ISCL/EORTC PMID 17540844)

5. Follow-up

Lifelong dermatology continuity (incurable but often chronic-indolent in early stages): stage-stratified skin exams, mSWAT + blood-Sézary surveillance, intensive skin-barrier + antipruritic + emollient care and S. aureus decolonisation/surveillance (leading cause of death in advanced), patient education on the indolent-but-monitored course and QoL-weighted goals (avoid overtreatment of early disease — most have a normal life expectancy), bexarotene metabolic-monitoring continuity, and re-biopsy + re-stage + heme-onc re-route on transformation/progression/erythroderma/Sézary conversion. Reconcile any systemic-therapy cutaneous toxicity and resume skin-directed control after routed systemic therapy.

6. Sources

Guideline: ISCL/EORTC revised staging and classification of mycosis fungoides & Sézary syndrome (Olsen et al, Blood 2007; PMID 17540844, DOI 10.1182/blood-2007-03-055749) + EORTC consensus treatment recommendations Update 2023 (Latzka et al, Eur J Cancer; PMID 37890355, DOI 10.1016/j.ejca.2023.113343 — newest authority, incorporates chlormethine/brentuximab/mogamulizumab/pegylated-IFN; supersedes EORTC 2017 update Trautinger et al PMID 28365528, DOI 10.1016/j.ejca.2017.02.027) + ALCANZA brentuximab vedotin (Prince et al, Lancet 2017; PMID 28600132) + MAVORIC mogamulizumab (Kim et al, Lancet Oncol 2018; PMID 30100375) + bexarotene pivotal (Duvic et al, JCO 2001; PMID 11331325) + romidepsin pivotal (Whittaker et al, JCO 2010; PMID 20697094) + MF/SS prognosis-by-stage validation cohort n=1,502 (Agar et al, JCO 2010; PMID 20855822)

  1. pubmed.ncbi.nlm.nih.gov/17540844
  2. pubmed.ncbi.nlm.nih.gov/37890355
  3. pubmed.ncbi.nlm.nih.gov/28365528