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@norseman44

Would your CTCL be Sezary Syndrome or MF? I have SS, have asked about phototherapy but never encouraged.
I’m on Methotrexate, Mogamulizumab & ECP. Not in a good place right now with sweats & itching,

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Replies to "Would your CTCL be Sezary Syndrome or MF? I have SS, have asked about phototherapy but..."

I was diagnosed with MF. I have itching on my buttocks and upper legs. I also use an itch relieving cream that I buy over the counter. It seems to help.

So, we don’t even 100% know yet. Because it’s early stage. No itching. Just a faint rash that is responding to fluocinilone cream. It’s likely not Sezary, might even be something like Sjogrens because my immune system is quite wonky. I’ve had lung issues before caused by immune responses and the production of too many white blood cells or too many blood cells rushing to my lungs and causing restriction. So we are not sure yet I’m waiting for a gene rearrangement study was hoping to get that but haven’t gotten it yet. Sorry about your itching. I know it must be horrible. Just walking around with this In my groin area is enough to keep me conscious about it every waking moment so let’s a collective sigh and just wish it all away