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

Blood Cancers & Disorders | Last Active: Apr 16 11:34am | Replies (38)
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Profile picture for laurelg @laurelg

I was diagnosed with Mycosis Fungoides by my dermatologist after some punch biopsies in April. She is referring me to a Hematologist/Oncologist. The local Oncologists know nothing about Hematology so I am trying to get an appointment at Mayo in Scottsdale (a 6 hour drive).
I'm hearing about UV light boxes as an initial treatment, but I also have PMLE (PolyMorphic Light Eruption) which is basically an allergy to UV light. Every day I wear 100 SPF sunblock and use UV blocking sleeves. Does anyone else deal with both of these issues?
Looking forward to getting to know folks in the group and share information and knowledge!

Laurel

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Replies to "I was diagnosed with Mycosis Fungoides by my dermatologist after some punch biopsies in April. She..."
Lori, Volunteer Mentor | @loribmt | Apr 16 10:35am

@laurelg Welcome to Connect! I’m going to tag members
@cj1o @nbogovic @josettecedo @beeclee @aloha2012 @shari715 to see if they can pop into the conversation and offer you some insights into your questions about UV light boxes and treatments for mycosis fungoides.

You mentioned trying to get an appointment with Mayo Clinic in Scottsdale. If you haven’t started the process yet, here is a link to their online request for an appointment: http://mayocl.in/1mtmR63
Your dermatologist’s input might be helpful with the referral.
It’s unfortunate you don’t have a hematologist closer to home. However, from my experience with Mayo, once there is a diagnosis and treatment plan often care can be transferred back home to be carried out with a local provider.
What were your symptoms that led to the diagnosis?

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