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Cutaneous T-cell lymphoma consistent with mycosis fungoides

Posted by lancasterva @lancasterva, May 13 11:25pm

I just received news today from a scrape biopsy that I have a rare skin lymphoma. My dermatologist thinks it is early stage and that light therapy will become the form of treatment to keep it under control. I previously was diagnosed in 1988 with Hodgkin’s Disease/Lymphoma stage IIB at age 25. I am now age 62. I just registered here to put out a feeler if there are others out there experiencing this same condition for which there is no cure. Thanks in advance for anything that you are willing to share… I greatly appreciate it! 🙋🏼‍♀️

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Lori, Volunteer Mentor | @loribmt | Aug 2 9:22am
In reply to @kkrok "My mum had stage IV CTCL and by far for her the itching was the worst...." + (show)
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My mum had stage IV CTCL and by far for her the itching was the worst. It was so debilitating to quality of life for her she too became depressed and began to disconnect. I think they feel very alone cuz no one can relate to the itching. So many people thought itching was in her head. So very hard to watch your loved one go thru it. The only thing that seem to give her any relief though briefly was the light therapy which we traveled 130 miles 3x week for her to get 30 seconds of treatment. It gave hope. Because of the chemo she could only take few seconds of light therapy because skin too fragile and couldn’t continue until chemo finished. The light therapy was the only type treatment to give her any relief with itching. Hope this might help

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Welcome to Connect, @kkrok. Thank you for sharing your mom’s story with us. You’re very compassionate and understanding. The itching associated with leukemia can be relentless so it’s a comfort that she had some relief with the light therapy. I’m so sorry she had such a miserable time.
Your comments feel like they are past-tense…is your mom doing ok now?

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