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Anyone have Cutaneous T Cell Lymphoma?
Blood Cancers & Disorders | Last Active: Jul 9 8:01pm | Replies (175)Comment receiving replies
It sounds like we are in similar situations. I have had a rash for over two years. Sometimes mild and other times debilitating. I have been to two allergists and three dermatologist. The allergist said it’s contact dermatitis with my allergy being everything scented, botanicals, dogs, metal etc., basically everything. However as avoiding triggers did nothing. My most recent dermatologist is leaning towards t-cell lymphoma, which as you said, is really rare.
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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.
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Hello and thanks for your post. I'd say, I'm glad to have company but.........I don't suppose either of us is happy to have this as a prospect (but none the less, I am happy to have someone to share with). I have seen two dermatologist and now a new oncologist (who is very 'out of the box') who said this type of T Cell Lymphoma is a possibility. She also said it is rare but that she has two patients with it and from my reading, it takes a very long time for diagnosis because doctors default to other, less ominous and rare conditions. So, this skin lymphoma, in the early stages, may be more common than they realize, just not diagnosed. I have seen two dermatologists and one oncologist and am heading to my third dermatologist for another look. I have a history of allergies so I have been eliminating things, trying new things, doing all I can to isolate a cause of allergy, but nothing yet. I have had the rash off and on for 8-9 months now. I'm treating it with steroid cream, which resolves it, but if I stop, it comes right back. My rash is only where there is a large number of lymph activity or nodes (chest, pelvis, neck, inner arms and legs). How about you? My biopsy came back as spongeotic dermatitis....which is often what Cutaneous T Cell Lymphoma is in the early stages. This is a treatable (but not curable condition) that can be halted or slowed down with various treatments but it can also spread to organs and do more damage if not diagnosed. Please keep me posted on your journeys with this. I hope neither of us has this.......but if we do, it would be great to be able to share our diagnosis and treatment.