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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

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

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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?

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Replies to "Hello @madisong Welcome to Mayo Clinic Connect. Cutaneous T Cell Lymphoma is a bit of a..."

Thank you for the reassuring words. The cream works remarkably quickly. I noticed a change within hours. I'm glad I found this forum where I can connect with people who have experience with CTCL. It is so rare that his doctor had never heard of it. Wondering if we should be seeking a specialist to follow him or if it is just something people live with?