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

dodgegirl2
First time for me to post on here. Like many of you, we have multiple problems. I have had a balance and gait disorder for 24 years with no
answers. I was handling it and could still drive even though people looked
at me strangely. It has been 10 years since I noticed real subtle weight
loss, and that feeling something isn’t right. Taking care of 2 acres of land
will help you loose weight. In 2015 I saw my Dermatologist for a rash..he
thought was hives. CTCL can be subtle. I had a rash on the top of my right
foot…the itching drove me crazy…once that stopped , the skin felt like light
sandpaper. The rash moved to inside right knee…to left knee…to the back
and covering the back, all within 2 weeks. Lots of punch biopsies done.
was sent to infectious disease doctor …He drew a lot of blood. In April
2017 saw the dermatologist and he saw something on my back he didn’t like
and did a punch biopsy.. Memorial weekend I found out I had CTCL.
My doctor is an oncologist and a hematologist. She does monthly labs,
and Ct’s every 6 months. Since I’m on the Mayo site I was in Rochester in
June of 2021. Even the doctors at the Mayo don’t have all the answers, but
in the course of my stay they did lab testing. I got home checked the portal
to see the records. Surprise…they found a fraction IgG Lambda M protein.
labs also showed higher Kappa. I printed everything off and sent it to my
doctor. She does an SPE and IFE test along with Kappa/Lambda every 3-4
months, My MGUS is stable….I take bexarotene for the Lymphoma . She
did tell me that the Lymphoma could be one reason Kappa is elevated.