Diagnosed with Mycosis fungoides. Don’t understand what to expect?

Posted by josettecedo @josettecedo, May 21 5:40pm

I was diagnosed with Mycosis fungoides. Don’t understand what I will expect to happen

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I was diagnosed late last year. I was stage 1B. My dermatologist ordered light therapy due to the number of lesions. I was approved for 72 treatments. First 4 weeks I had 3 a week and then lowered to 2 a week. Spots are fading. At this point, I will complete the treatments and then, hopefully, will be in remission. My doctor assured me I would die WITH this disease, not FROM it!


Welcome @josettecedo, as you probably already read or been told, mycosis fungoides is a type of cutaneous T-cell lymphoma (CTCL). CTCL is a group of rare blood cancers that cause changes in your skin, like itchiness, rashes, plaques or tumors. Although mycosis fungoides affects your skin, it's not a form of skin cancer because your T-cells — not skin cells — become cancerous.

In addition to the helpful post from @beeclee, I'm tagging other members like @shari715 @dws1968 @sherriesalinas @mkmann @bradders @kbirt who was also have Mycosis Fungoides.

While we wait for others to chime in, you might also be interested in this related discussion:
- Anyone have Cutaneous T Cell Lymphoma? https://connect.mayoclinic.org/discussion/cutaneous-t-cell-lymphoma/

Jose, you're asking good questions about what to expect. Many treatments are available to treat cutaneous T-cell lymphoma. Which treatments are best for you depends on your particular situation, including the extent or stage of your lymphoma.

Do you know the stage of your lymphoma? Do you have a treatment plan already?


Hi Jose. I was diagnosed last year with Stage 1A. I am followed by dermatologist and hematologist oncologist. I have a light box in my house and do treatments three times a week. It only takes about 5 minutes to complete the treatment. My doctors believe I will always need this treatment. I see my dermatologist frequently and he looks for more lesions and cuts new things out but I have no new lesions. I know there is chemo which is in pill form that is well tolerated but if possible I will stick to the light box. You can ask any questions and I will try and provide useful information.

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