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Anyone have Cutaneous T Cell Lymphoma?

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

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@shari715

Wow. I am so sorry. My dermatologist noticed something strange on the back of my leg during a biannual routine checkup. I think he was able to spot the difference because he sees my skin often. I was shocked with the diagnosis. I saw an oncologist who did PET scan and blood work. I was so happy it was stage 1. I am doing UV radiation 3 times a week. My doctor was amazing and worked with my insurance for me to purchase the equipment for my house. None of this has been cheap but now I am set up it should be okay. This is the second time I have had cancer - I had a non-Hodgkin lymphoma. This involved chemo and radiation 35 years ago. I was not happy with another cancer diagnosis but at least it is stage 1 and not stage 3. I know that my Cutaneous T-cell lymphoma will most certainly require chemo, surgery, radiation. I know the oncologist could not believe I was only Stage 1. It is very unusual. What you describe is the expected course. Hang in there. Cancer is not fun but if you have a good team of doctors, excellent health insurance, family, and friends for support it does make life slightly easier. My insurance does not cover care at Mayo. Feel free to stay in touch.

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Replies to "Wow. I am so sorry. My dermatologist noticed something strange on the back of my leg..."

Shari715

Good to hear your ctcl is undee control. I, too have stage 1 MF. Treated with uvb at the dermatologist office it is under control. I'd like to treat at home with lights. Can you share the brand/model you are using?

Thanks, Gary