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Anyone have Cutaneous T Cell Lymphoma?

Blood Cancers & Disorders | Last Active: Jul 9 8:01pm | Replies (175)

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@shari715

I was diagnosed with Cutaneous T-Cell lymphoma by my dermatologist. My excellent dermatologist noticed an area on the back of my leg that had “changed”. On biopsy it was diagnosed as mycosis fungoids T-Cell lymphoma. I began UV treatment immediately. I have just had a PET scan and will see the oncologist next week - three months after the initial diagnosis. According to the doctors “this is slow growing and will not kill me”. As a side note in 1988, I was diagnosed treated with chemo and radiation for non-Hodgkin lymphoma. So 35 years later a different lymphoma. The oncologist is unclear if there is a connection as CTCL is rare cancer. I will know next week if I need other treatments now.

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Replies to "I was diagnosed with Cutaneous T-Cell lymphoma by my dermatologist. My excellent dermatologist noticed an area..."

shari715

Thank you for sharing your story with me, I am so pleased your treatments went well. My sister will see an oncologist soon. She is also having a scan but she does not remember what kind of scan. She also has an excellent dermatologist who did a total body check of lymph nodes with negative results.
Please let me know how you make out and if you need further treatments. Sometimes it is a battle we go through alone. All the best.
Debby