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Mycosis Fungoids Lymphoma

A MyLymphomaTeam Member asked a question 💭
Reading, PA

How long can you live with Lymphoma that is only on the skin? I have Mycosis Fungoides since 2017. Gets Bad in Cold weather. Use a steroid creme. Is there a Better Treatment for the skin Lymphoma??? I do go to a Dermatologist. But does Nothing more than cream. O.005 called Betamethasone Dipropionate.

April 1, 2023
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A MyLymphomaTeam Member

My mycosis fungoides is of the more aggressive follicular variety. I use a Narrow Band UV light box plus the occasional cortisosteroid cream to keep rash patches off my back. The combination works very well though I haven't found anything that works with scalp and face rashes.

May 10, 2023
A MyLymphomaTeam Member

I too was diagnosed in 2017 with some blood involvement. I was told by my team that I could have this for decades and, more than likely, will die with it not from it. I've had phototherapy and 6 sessions of spot radiation Proton therapy on one area of my face. I take low dose Methotrexate oral chemo which I'll be on indefinitely and I use Tacrolimus ointment on spots that show up. If you're just using an ointment, then it sounds like it's very indolent (slow growing). See if Phototherapy can be used on areas that are more troublesome. I also try to get outside in the sun for 20 min. a day to get my vitamin D. You may never progress any further than what you were first diagnosed. I was diagnosed stage 1a and it hasn't progressed, and my doctors have said with the low dose chemo, it no longer shows in my blood markers, so I'm in remission but still get spots every now and then. Good luck to you on your journey.

April 1, 2023
A MyLymphomaTeam Member

I had mycosis fungoides since 2004 to present I am doing treatments now . I use a steroid cream doesn’t help with the itching

May 5

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