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Is Cutaneous T-Cell Lymphoma a Death Sentence?
Blood Cancers & Disorders | Last Active: Jul 29 4:07pm | Replies (28)Comment receiving replies
I was diagnosed with Cutaneous T Cell Lymphoma back in 2010. It took quiet awhile to get a definite diagnosis. I was treated with UV light treatments. I was affected on my limbs (legs and arms) but no body areas. I finally went into remission about two years after that with only UV treatment and anti itch meds. I had major sores and almost looked like a bad case of measles. Really. It did produce a internal tumor or two that were removed. One remaining over the liver area. Which has never changed in size and remains in place. Now in 2024 I developed a new situation of sores and terrible itching on my limbs (legs and arms) again. First it was thought to be a dermatitis but time again proved it to be T Cell. This time I am doing photo therapy and anti itch creams; and have been doing so for the past 6 months. The itching has finally stopped and I seem to be about 90 percent healed again. Sunlight is my friend and I try for at least 15 minutes a day in the sun plus am winding down on the phototherapy. Will see doctors again in August to see what my blood work determines. And what the professionals decide is needed for any follow-up to be sure it goes into remission.
Replies to "I was diagnosed with Cutaneous T Cell Lymphoma back in 2010. It took quiet awhile to..."
So sorry to hear all you’re going through. It sounds as if your body is fighting it tooth and nail and that you have a knack for beating it down despite it rearing its ugly head. How old are you? I’m 61 and feel that if this is early stage for me, it will be something that will eventually take me to my grave. But at the same time, your story inspires me so much. I feel like mine might be different since it’s in such a high risk area of my groin. And, maybe it has the propensity to attach itself to a lymph node and go system wide at some point. I think that might be my biggest fear, but I don’t know much about t-cell lymphoma. I think mine might be Micosis Fungoides? Not sure if that is bad or worse then Sevary. I’m too afraid to find out. My hope is that my genetic study comes back negative for genetic abnormalities, that would point to lymphoma. Did they do the gene test on you and how did that come out? Thanks for your time. -Paul
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@sdg45
Welcome to Mayo Connect. Your response is so appreciated. It’s wonderful to hear the success stories and fortunately, medical science is improving outcomes all the time.