Anyone have Cutaneous T Cell Lymphoma?

I have a National Biological UV light in my home and I use it 3 times a week. It is supposed to be life long treatment so it is great to have it in my home. If I went to a dermatologist office it would cost $40 a visit. Long vacations are a bit complicated but it is so helpful to have the equipment available. It does however sit in my living room. Nice to have an easy to use equipment at home.

My dermatologist tried for two years to diagnose a rash on my thighs that got progressively worse over time. She did several biopsies over that period. I’m not sure of the exact details, but she finally had the biopsies examined by a radiologist who specializes in blood diseases. I was diagnosed with Cutaneous T Cell lymphoma, Mycosis fungoides. She referred me to an oncologist who is also a hematologist. This is not curable, but can be treated.

After I was diagnosed with Cutaneous T Cell Lymphoma, Mycosis Fungoides in November 2022, my dermatologist sent me to an oncologist who prescribed the light treatments. I developed a melanoma, so they were suspended. Then I had potilegio by infusion for over a year. I received this until it no longer seemed to control my skin issues. I just started Bexarotene capsules. My understanding from the prescribing pharmacy is that it could take around 4 months to see progress with my skin. In the meantime, the flaky skin condition is on my face and neck, particularly around my eye. Steroid creams cannot be used in those areas. Time will tell. I use moisturizers, but the flakiness continuously reoccurs. Fortunately, it doesn’t itch.

Thanks for the additional information. I have been doing light treatment for about 18 months but have wondered about melanoma or basal cell cancer. I do see my dermatologist frequently and he does a thorough skin check every visit (and usually finds something to biopsy) but it is an ongoing fear. I live in an extremely dry climate and my skin is so flaky and dry. I use so much cream and not anything cheap. I am unsure if it actually helps. I am fortunate I was diagnosed early - stage 1A