Cutaneous T-cell lymphoma (Mycosis Fungoides)

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Overview

Mycosis Fungoides-type Cutaneous T-cell lymphoma (MF-CTCL) is a rare form of cancer that develops slowly and unpredictably. It occurs when a type of white blood cell (T-cell), which is part of the immune system that normally fights infections, starts multiplying abnormally in the skin. This type of cancer is called lymphoma. Mycosis fungoides (MF) is the most common form of CTCL. Since patients have a very long survival, it is estimated that there are as many as 19,000 patients living with cutaneous lymphoma in Europe. MF-CTCL is more common in men than in women, in people with black or brown skin than in people with white skin, and in people older than 50 years than in younger people.

 

MF-CTCL may look like other common skin conditions and may have been present for years or even decades before a diagnosis of MF-CTCL is made. Patches, plaques and tumors are the clinical names for various skin manifestations and are generally defined as "lesions. Although it is possible to have all three types of lesions at the same time, most people who have had the disease for many years suffer from only one or two types of lesions - usually patches and plaques. Itching is a common symptom of MF-CTCL that occurs in at least 80% of people. MF-CTCL is not a contagious infection and cannot be transmitted from person to person.

 

MF-CTCL is very difficult to diagnose, especially in the early stages. The symptoms and skin biopsy findings of MF-CTCL resemble other benign skin conditions such as eczema, psoriasis, parapsoriasis and pityriasis lichenoides. MF-CTCL is sometimes initially diagnosed only by dermatologists or oncologists specializing in cutaneous lymphomas. 

 

Treatments for MF-CTCL are constantly evolving. At any given time, numerous clinical trials are underway to find better treatments. In most patients with MF-CTCL, the lymphoma cells are primarily confined to the skin, and excellent and long-lasting responses can be obtained with treatments targeted to the skin ("skin-directed therapy"). Examples of skin-directed therapies include creams, ointments and gels applied to the skin, such as topical steroids, topical nitrogen mustards, retinoids, chloromethine and immune-stimulating creams (imiquimod). Ultraviolet light ("medical tanning") and radiation therapy are also forms of skin-focused therapy. 'Systemic therapy' refers to any treatment that, after absorption, reaches the bloodstream and thus is distributed throughout the body's 'system'. 

 

Systemic therapies are used in MF-CTCL when skin-directed therapies do not work well enough. 

Patients Association

Skin lymphoma foundation - https://www.stichtinghuidlymfoom.nl

Lymph node association LVV Flanders - https://www.lymfklierkanker.be