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Anyone have Cutaneous T Cell Lymphoma?
Blood Cancers & Disorders | Last Active: 2 days ago | Replies (171)Comment receiving replies
Hi. My husband is 58 and we noticed some rashly looking patches on his skin and after a biopsy, it turns out he has CTCL, stage 1. I would find it comforting to have a connection to someone who has a similar diagnosis. It seems we have caught it early and he has started with some steroid creams. We haven't had the blood test yet but that's next. If you are interested in connecting to chat about this, I understand it is somewhat rare, so it would at least be helpful to share experiences. Thanks.
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Hello @madisong Welcome to Mayo Clinic Connect. Cutaneous T Cell Lymphoma is a bit of a rare condition. I didn’t find many members in our forum but we do have a couple in this discussion. It is an older discussion but I’m going to tag the members and hopefully they’ll pop back into the conversation so that you and your husband can get some suggestions and feedback.
In the link provided below, fellow members,
@cindylb @carlos12 @dee081772 @taddyp have all talked about their experience with CTCL, though I believe Cindy’s diagnosis was changed later.
Cutaneous T Cell Lymphoma
https://connect.mayoclinic.org/discussion/cutaneous-t-cell-lymphoma/
Here are a few informational articles about CTCL you might find helpful.
https://www.mayoclinic.org/diseases-conditions/cutaneous-t-cell-lymphoma/symptoms-causes/syc-20351056~~~
https://www.oncolink.org/cancers/lymphomas/cutaneous-t-cell-lymphoma-ctcl/cutaneous-t-cell-lymphoma-ctcl-staging-and-treatment
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https://my.clevelandclinic.org/health/diseases/17940-cutaneous-t-cell-lymphoma
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https://lymphoma.org/understanding-lymphoma/aboutlymphoma/nhl/ctcl/
It’s really positive that your husband got an early diagnosis. From my understanding most cutaneous T-cell lymphomas grow very slowly and aren’t life-threatening. He had the biopsy so now you’re waiting for blood work. Is the steroid cream helping his symptoms?