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Anyone have Cutaneous T Cell Lymphoma?

Blood Cancers & Disorders | Last Active: 2 days ago | Replies (171)

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@loribmt

Hi @kbirt, Welcome to Connect. I’m sorry to hear you’ve been struggling with Cutaneous T Cell Lymphoma for over 10 years and not finding much relief. There are a number of other treatment options that can help get this under control.
I’m wondering if you’ve been offered light therapy treatments, medication besides skin creams or photopheresis?

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Replies to "Hi @kbirt, Welcome to Connect. I’m sorry to hear you’ve been struggling with Cutaneous T Cell..."

While I was still able to drive, I was being treated by a dermatologist and receiving light therapy treatment. Although it did help somewhat, I had to quit when I could no longer trust my vision and ability to drive. Although my dermatologist misdiagnosed me three times before another biopsy said it was sub-cutaneous T Cell Lymphoma. She did try to get an in-home light box for me, but SS would not pay for it. Due to my whole-body condition, I require the full enclosed light box.
So far, I find that although you can live with this condition, it is far from pleasant. I am very intolerant of cold weather as it sets pins and fiery needles sensation in my arms and legs. I am pretty much a recluse all winter and only venture out when temperatures rise above 70. (Sorry for the long note. I guess I suffer from boredom and loneliness too.)