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Anyone have Cutaneous T Cell Lymphoma?

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

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?

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Lori, Volunteer Mentor | @loribmt | Feb 8, 2023

A second opinion never hurts. I was just looking through the Mayo registry to determine what specialist is best for this type of cancer…hematologists or dermatologists. I’m seeing on our Mayo site that there are dermatologists who specialize in Cutaneous T-cell Leukemia.

Just to give you an idea for what to look for in a specialist here is the list of Mayo doctors: https://www.mayoclinic.org/diseases-conditions/cutaneous-t-cell-lymphoma/doctors-departments/ddc-20351058?page=2#e60ad0d0bc354936a881a57de90ea8a3

If you’re interested in visiting any of the 3 Mayo campuses here’s a quick link to get you started with an appointment request. http://mayocl.in/1mtmR63

As I mentioned before, I don’t see many discussions in our forum for CTCL but it is a condition that is more prevalent that reflected here. So you may be able to find a specialist nearer your home. This will be a lifelong condition but fortunately there are medications which can slow the progression. The steroid cream sounds like it’s been a game changer already.
But you’ll want to make sure your husband is seeing a specialist who will follow him closely.
Is this his primary care provider who is treating him?

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