Cutaneous T Cell Lymphoma

Posted by cindylb @cindylb, Jul 28, 2017

Does anyone in the group have Cutaneous T Cell Lymphoma? I am waiting for an appointment with my oncologist (follow up for breast cancer) and am at possible risk for this cancer. I’d like to hear from anyone who has experienced these symptoms, how they got their diagnosis and what treatments they have or are having. Thank you.


Hello all….
I still have no firm diagnosis for my ongoing skin rash but thought I’d reach out and see if anyone with Lymphoma has any new insights with your diagnosis and treatment that might be of help. I have now had a rash for one year. It’s itchy, only in three places where I there are large numbers of lymph nodes. I’m using a steroid cream only. If this is T Cell Cutaneous Lymphoma this is the only treatment until it advances (I guess). I was hoping it would just go away. My oncologist says if it is a skin lymphoma that there is no additional treatment until the condition progresses. Worrisome and irritating to just be sitting and waiting on this ‘maybe’ diagnosis.

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Hello- I know I'm 2+ years after your posting this, but I have a rare skin disease called Lymphomatoid Papulosis. I have had it for almost twenty years, but was misdiagnosed for 9 years. Finally I demanded my derm do a biopsy and it came back as LyP (abbrev). They say 1-2 people in a million have it, but I think people are just getting misdiagnosed. I have learned what my triggers are and can say right now I am in remission. I would have red bumps or papules on my stomach, abdomen and back. Occasionally a few would pop up on my arms or legs. They were SOOOOO itchy! I would scratch where they would bleed a bit, scab over and leave a tiny scar. When I was finally diagnosed with it- they knew so little about it- there were no "types". Now, after a lot of research, I believe I am type A. There is a facebook page for it if anyone thinks they may have it. Before my definitive diagnosis, I was told I had dermatitis, allergy to Bounce fabric softeners, Folliculitis. I know my triggers- Stress is the biggest. I wear cotton clothes only- nylon, poly, silk, rayon- forget it! A jacuzzi tub with the jets of water spraying directly on my back- outbreak. My last back massage- felt great, but as I was getting it I could feel the bumps begin to erupt on my stomach- sure enough there they were afterwards! So- I attribute that to either the oil she was using – but I think it was the direct constant friction of skin to skin contact. When I have outbreaks I use Clobetasol foam (the cream is like ointment-very greasy). Some people have other types (B-F) and have it much worse than I do. They say people with LyP have a 20% greater chance of developing Lymphoma. For now- I am good, and no outbreaks! Good luck to all!

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