Fast Facts

The me- dian age of presentation is over 50 years old, with a higher occurrence in men compared to women. [...] There is general consensus that these numbers are low estimates, because they do not account for misdiagnosed or undiagnosed patients. It is difficult to diagnose FMF in its early stages, and there is not an accurate reporting system. [...] Patients may also experience no specific symp- toms related to their skin rash. How is Folliculotropic Mycosis Fungoides Diagnosed and Staged? [...] Stage IIB - One or more tumors are found on the skin; lymph nodes may be enlarged, but the cancer has not spread to them. [...] Stage III - Nearly all of the skin is reddened and may have patches, plaques or tumors; lymph nodes may be enlarged, but the cancer has not spread to them. [...] Stage IVA - Most of the skin area is reddened and there is involvement of the blood with malignant cells or any amount of the skin surface is covered with patches, plagues or tumors; cancer has spread to the lymph nodes and the lymph nodes may be en- larged. [...] Stage IVB - Most of the skin is reddened or any amount of the skin surface is covered with patches, plaques or tumors; cancer has spread to other organs; and lymph nodes may be enlarged whether cancer has spread to them or not. [...] FMF is generally treated similar to other forms of MF, but needs to be monitored more closely because of involve- ment of hair follicles. Most patients should first be treat- ed with skin directed treatments like light (photo) therapy and topical agents. If skin directed treatments don’t work, then systemic agents (pills, injections, or intravenous treat- ments) are added. [...] Skin radiation for FMF is usually a low dose method (electron beam) that spares the internal organs. A very small number of patients with FMF need more ag- gressive therapy with chemotherapy or a stem cell trans- plant to control their disease. What is the Prognosis of Folliculotropic Mycosis Fungoides? The prognosis of FMF is determined by the type and the ex- tent of skin involvement and ove [...] People with more advanced FMF (thicker lesions or tumors or involvement deeper in the skin) are more likely to progress to more advanced stages. Large cell transforma- tion is a sign of progression, and may indicate more serious disease. Involvement of organs other than the skin (such as the lungs or liver), lymph nodes, or blood also indicate more serious disease. Participating in Clinical T