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

Posted by josettecedo @josettecedo, May 21, 2024

I was diagnosed with Mycosis fungoides. Don’t understand what I will expect to happen

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

cj1o | @cj1o | Jun 17, 2025

In reply to @aloha2012 "06-16-2025 Hey, so sorry you are having these issues over the past 30 years. That's a..." + (show)

Yes, I continue with phototherapy and apply steroid cream to lesions. However, I cease steroid treatment as soon as particular lesions become less "angry" in appearance, ie, begin to fade.

I also limit phototherapy frequencies and exposure times when overall lesions begin to fade. I am experiencing the side effects of long term NB-UVB treatments, ie, photoaging, xerosis, actinic damage, pruritis and photocarcinogenesis (only basil cell so far).

Ski bum | @nbogovic | Jun 17, 2025

I have been diagnosed with MF stage 1a phase since January of this year and started phototherapy in March and I have it three times a week. Recently when I saw my dermatologist oncologist he decreased it to twice a week. There are sometimes some patches that come up and ai treat it with a steriod cream and seems to be working. My advice is to eat a healthy diet avoid processed food as much as possible, manage your stress and do things that bring you joy and be with people that support you in this journey.

lav3 | @lav3 | Jun 18, 2025

In reply to @cj1o "Yes, I continue with phototherapy and apply steroid cream to lesions. However, I cease steroid treatment..." + (show)

Thank you for the info. What precisely is the appliance you use which has narrow band UVB?
What do you think of UVB infusions?

lav3 | @lav3 | Jun 18, 2025

In reply to @cj1o "My history with MF: 1997 – • June – Mycosis Fungoides (MF) diagnosed. • August –..." + (show)

@cj1o

My history with MF:

1997 –
• June – Mycosis Fungoides (MF) diagnosed.
• August – Mechlorethamine full body painting treatments begin.
• November – End course of mechlorethamine treatments. Could not tolerate.
• December – Begin radiological phototherapy UVB three times per week as hospital outpatient.

1999 –
• January – Radiological phototherapy UVB treatments at hospital ends. Remission indicated.
• February -- Self applied prescription strength topical steroid treatments begin.

2001 –
• October -- MF plaques and patches increase in frequency and intensity. Topical steroid treatments ineffective in controlling. First relapse indicated. Higher strength topical steroid prescribed.

2007 –
• April – New plaques and patches diagnosed again as “very suspicious for MF”. A second relapse indicated.
• May -- Begin home localized treatments using Sperti Sedona UV table lamp on suspicious lesions and continue prescription steroids treatments.

2008 –
• January through December -- Continue home localized UV and steroid topical treatments.
• Continue annual full body exams, biopsies as needed.

2016 – 2019
• July -- Increase in frequency and intensity of patches and plaques in new locations. A third relapse indicated. Continue topical steroid and begin full body exposure to summer sunlight to control.

2020 –
• March -- Increase in frequency and intensity of patches and plaques. Topical steroids used to control outbreaks no longer effective.
• September -- Pathology reports diagnosed biopsies of plaques and patches as MF. A fourth relapse indicated. Doctor recommends lifelong radiological phototherapy full body NB-UVB treatments from September 2020 to December 2020 as hospital outpatient.

2021 –
• January -- Radiological phototherapy – Doctor recommends full body NB-UVB ongoing and continuing as lifelong treatment plan via home unit.

With my doctor's prescription, in January 2021, I ordered the Daavlin Series 7 - 10 lamp full body UVBNB unit and vary exposure frequencies from 1 to 3 times per week as necessary to control lesions. Still using original lamps. The MF lesions have in 2024 - 2025 advanced in frequency and in novel areas of my body including where the "sun does shine".

After ~ 30 years of managing this disease, it appears the MF has now become more aggressive. At 78 years of age, I am otherwise quite healthy. I will see my MF dermatologist in December 2025.

Jump to this post

Thank you so much.
May you gain your skin health back by improving your immune system.
Have you tried metabolic therapy with metformin, berberine, membendazole and ivermectin?

cj1o | @cj1o | Jul 30, 2025

In reply to @lav3 "Thank you for the info. What precisely is the appliance you use which has narrow band..." + (show)

Daavlin Series 7 - 10 lamp full body UVBNB unit.

I am opposed to systemic treatment options for now.

laurelg | @laurelg | Apr 15 3:22pm

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

Lori, Volunteer Mentor | @loribmt | Apr 16 10:35am

In reply to @laurelg "I was diagnosed with Mycosis Fungoides by my dermatologist after some punch biopsies in April. She..." + (show)

@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?

laurelg | @laurelg | Apr 16 11:34am

Hi, thank you for the welcome! I've had odd rashes off and on for about 10 years. I've also had dark patches in my armpits for years that no doctor (dermatologist or internist) could figure out. My dermatologists (I had one for years and switched to a new one about 3 years ago) were always puzzled and always recommended steroid creams - often times by the time I got an appointment, the rash was gone. The rashes came and went, always somewhat itchy and red.
Finally, about a month ago, I had an appointment with the dermatologist while I had a few patches of rash. I had been concerned that my PMLE had spread from my arms where it's always been, to my trunk. Dermatologist took 3 punch biopsies and said they'd call me with the results. And a few weeks later, Mycosis Fungoides was the result!
I've requested that my dermatologist send the referral to Mayo, hopefully they are getting that done today. I tried to make an appointment with Mayo but they wanted me to start with a dermatologist and I'd really rather not repeat that step, especially since it's a trip for me to get there and back. UPDATE: The dermatology office has sent the referral!

spitz2676 | @spitz2676 | May 20 8:40pm

In reply to @colleenyoung "Welcome @josettecedo, as you probably already read or been told, mycosis fungoides is a type of..." + (show)

@colleenyoung

Hi I've been diagnosed with mycosis fungoid but I'm from the Caribbean, there's no treatment for it please help

Please sign in or register to post a reply.