Mycosis Fungoides Support Group

My rash started on my buttocks, spread to thighs, inner arms/legs, stomach, breasts and in the last year the soles of my feet and I am assuming since my ears are so very itchy--its in my ears--basically all the places the sun doesn't shine!

I have started on NB-UVB--whole body, 3 treatments so far up to 2:49 SECONDS (i think the nurse said .7 joules?) I did get quite burned on the 3 time so have taken a few days off.

QUESTION: Does anyone else have MF in their ear canals/scalp/soles of feet and if so how is it being treated??

One Dr suggested the nitrogen mustard "wash", the other dr suggested Clobetasol for my feet since the clinic I am getting UVB does not have a light box for the feet.

It seems on one hand that since MF is so treatable, no big deal if you get it early, you will die with MF, than of MF that no one is really taking this stuff on my feet, scalp and ears like it matters.

Any Advice?

Gloria