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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

That is strange because my dermatologist was not even willing to order the PET scan and he admits he knows about light treatment but not about chemo. I know it is hard to get referrals and appointments with doctors but speak to your primary care. Find a hematologist who specializes in lymphoma.

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Replies to "That is strange because my dermatologist was not even willing to order the PET scan and..."

Thank you. I have been having a feeling I should ask them again. Since February of this year when I was diagnosed, I have only been given ointment and I sit in sun. I noticed both ointment/sun helped with skin lesions but once they started to fade I got this pain in my arm like I am being cut with glass and I am exhausted, losing a little hair, loss of appetite and two months ago I had blood in urine. I feel it is lonely, unknown scary journey. I am grateful for you reaching out and this group. Best wishes for you and all with the journey they are on. Sherrie