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

I was just diagnosed today with CTCL. I am 46 and have some co-morbidities (psoriasis, Factor V Leiden with DVT history), but am overall pretty healthy! I meet with my PCP in two weeks and need a dermatology referral then since my health insurance is changing. What a mess it is to navigate the system to ensure good care. Looking forward to reading about the experience of others and how you manage CTCL in daily life.

Welcome to Connect, @ccarter006! It can be a relief to speak with others who share a similar diagnosis to realize you’re not alone. There are a number of members who also have Cutaneous T-cell lymphoma-CTCL. You’ve already popped into this conversation with @josettecedo @beeclee @aloha2012 @shari715 where they share their experiences.
More CTCL discussions can be found by typing CTCL in the search bar. https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=CTCL#discussion-listview

From my understanding there are several different types of CTCL, with Mycosis fungoides being the more common of this rare type of lymphoma. Were you diagnosed specifically with mycosis fungoides?
Since CTCL is a form of lymphoma, and you have a history of Factor V Leiden which is a blood disease, are you already working with a hematologist oncologist? They may also be able to discuss your CTCL.
Are you having switch doctors because of your insurance change?

I was diagnosed with Mycosis Fungoides in May 2024.

Hey, we recently got a home lite box thru our insurance company with the help of our derm. We have lots of prescription creams and ointments. It gets to be really frustrating trying to figure out what helps. Recently we discovered a FB company that sells products made with goat milk. We buy unscented goat curds which you use in your bath water. Also found Amish farm soap which is quite soothing. Not sure if I am allowed to name the two companies but can message you if you like. Still using prescription meds though. What type of is your CTCL ? Mycosis Fungoides lives here.

I was surprised with a tentative diagnosis of mycosis fungicides by a local dermatologist after 2 biopsies, and went to MD Anderson in Houston for confirmation. After extensive testing, they concluded that I do not currently have MF, but because it is so difficult to diagnose in the early stages, will treat me as though I do. They prescribed a steroid cream that faded but did not eliminate the patches. They then prescribed Desonide cream which you can only use for two weeks. In that time, one patch faded significantly but is still lightly visible, the rest have pretty much disappeared. I have a tele-appointment with the doctor at MD Anderson next week to find out what to do next. Meanwhile, I see my local dermatologist every 3 months.
This was an unwelcome surprise after breast cancer and several instances of basal cell skin cancer.

I was diagnosed with Sezary Syndrome which is also a T Cell Lymphoma currently taking Methotrexate & using Betaderm steroid cream
Seems to be keeping things under control

Welcome @catherine53. I’m sure this new diagnosis of mycosis fungicides was an unwelcome surprise after your other experiences with breast cancer and skin cancer. It’s encouraging to read that the Desonide cream is having a positive impact on the areas of treatment. Hopefully this is a once and done.
There are members in Connect who have shared their success stories with light therapy for their MF symptoms after initial treatment. Wonder if that would be a possibility for you?

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.

06-16-2025
Hey, so sorry you are having these issues over the past 30 years. That's a long time to be uncomfortable. We have the same lite box that you have. It's in our dining room which is fine as we never eat there. Since your lesions have advanced are you continuing to do the lite therapy? Are you applying any meds to those areas?

I have mycosis fungoides. What light therapy do you use? What nm near
infra red?