Mycosis fungoides

I was diagnosed in the late 1990s and my treatments have always been geared to combat the bad skin conditions. I once had on about 25% of my body covered with scaly red flakey skin. After many years of light treatments the rash was reduced nearly 100%. About 15 years ago the rash returned to almost 20% of my body.

Getting my rash to diminish again

This time I was sent to an Oncologist and a Dermatologist that ran a monthly clinic for patients with blood cancers. They restarted light therapy but with a much narrower light band that was intended to be safer. It helped, but some rash persisted and I wad put on Methotrexate plus the light treatment. From this combined treatment my rash diminished considerably. I stopped attending the clinic and was treated by the same Dermatologist.

About 5 years ago I switched to a local dermatologist and discontinued both the methotrexate and the light treatments. I also started seeing a new Dermatologist at Washing University in Saint Louis. In the last year and a half my rash is completely gone. No one knows why and they say each case is different. The current opinion is that the lack of rash is a good sign, however it could also return at any time.

I'm fortunate in that Mycosis fungoides is usually a very slow progressing cancer. I'm unfortunate in that my early light treatments have brought on a surge in small lesions everywhere, usually 2-3 a month. Lots of biopsies, minor surgeries and lately low level radiation treatments. - Mike