Cutaneous T-cell lymphoma consistent with mycosis fungoides

I was diagnosed when i was 70. The dermatologist initially thought is was eczema. I have tried the light therapy and a steriod cream but has not stopped it. I had an appointment with the VA and I have been to Mayo who confirmed what the dermatologist recommented. My next option is the Radiation therapy at Mayo. I discussed with the Veteran Service Officer and found that this is one of the condition from Agent Orange used in Vietnam. /I have qualified for a disability

Welcome to Connect @lancasterva and @cessnaman. Looks like you’re both sharing a similar diagnosis of Cutaneous T-cell lymphoma with mycosis fungoides. There are several members in the forum who also have Mycosis Fungoides such as @shari715 @dws1968 @josettecedo @sherriesalinas @mkmann @bradders @kbirt @beeclee. You can meet them, and others in this discussion:

Diagnosed with Mycosis fungoides. Don’t understand what to expect? https://connect.mayoclinic.org/discussion/i-was-diagnosed-with-mycosis-fungoides-dont-understand-it-and-what-t/

@cessnaman. Thank you for your service to our country but I am sorry to hear you were a victim of Agent Orange. My brother was too. He passed away at the age of 27 in 1969 after being doused with the chemical. Back then the army disavowed any correlation between Agent Orange and Hodgkin’s Lymphoma or any blood cancers. I am relieved for you that you’re being recognized and allowed to claim disability.
Wishing you both success with your respective treatments.
@lancasterva, have you begun the light therapy yet?

I am new to this forum, saw your post & will share my experience. I have been dealing with CTCL manifesting as CD30+ lymphoproliferative disorder and mycosis fungoides, diagnosed 9 years ago. Topical clobetesol has helped but during this time, I have needed cycles of methotrexate (mtx) up to 20mg. It resolved but does wax and wane and I am in another "flare." Restarted mtx so will see how it does. My doctor never suggested phototherapy. I hope this helps. Each person's journey is a little different. Best wishes to you.

Also want to thank you for your service! Best wishes for successful treatment. Another option my doctor brought up was radiation. We decided to do methotrexate, hopefully it resolves

Hi @nani2025. Welcome to Connect. Your experience with CTCL and what has worked for you to help control the symptoms is really valuable information for members like @lancasterva who are newly diagnosed. So thank you for sharing with us!
How long ago were you diagnosed with CTCL?

Just want to say Hi to everyone I was finally diagnose with MF (Mycosis Fungoides) about 2 yrs ago after several Dermatologist visits and punch test/ scrape test they all thought it was eczema or psoriasis. I started with Topical clobetasol and had a bad reaction to it them we tried a couple of other topical ointments to very little avail, what has really help is UVB light therapy. If you saw me 2yrs ago to know you would never know I have MF. Light therapy has really helped me, hope this really helps others and as we all walk down this road with MF / CTCL just know you're not alone as you can see from this forum. thanks to everyone who shares and letting us know what to expect or how to treat in other stages of our journey.

Welcome to Connect, @darenh! It’s really interesting the different treatments for CTCL with unique results for each patient. In your case the UVB light worked wonderfully! Thank you for joining in with others who are sharing their experiences with treatments that are working or what has helped the most. Do you have light source at home or do you go to a clinic for treatments?

I have a light source at home the Daavlin 7 series, took months working with insurance and my Dr to get it. I was driving 60 miles one way so 120 round trip 3 times a week when I started light therapy.

My sister has CTCL and I’m looking for ways to help her.
She has been having a hard time lately and has become depressed.

She has lymphedema and has to buy gauze rolls and ace wrap for both feet, legs, and thighs. Does anyone know where she can get help buying supplies?

I’m also looking for tips to help keep her skin moisturized and calm the itching.

Thank you in advance for any help provided.

My mum had stage IV CTCL and by far for her the itching was the worst. It was so debilitating to quality of life for her she too became depressed and began to disconnect. I think they feel very alone cuz no one can relate to the itching. So many people thought itching was in her head. So very hard to watch your loved one go thru it. The only thing that seem to give her any relief though briefly was the light therapy which we traveled 130 miles 3x week for her to get 30 seconds of treatment. It gave hope. Because of the chemo she could only take few seconds of light therapy because skin too fragile and couldn’t continue until chemo finished. The light therapy was the only type treatment to give her any relief with itching. Hope this might help