Anyone have Cutaneous T Cell Lymphoma?

My sister is being treated for T cell lymphoma on her arm.
They are used radiation, which involves magnetic and electrical
source that travels at the speed of light. Done in hospital. 5 sessions so
far
but going to do another biopsy as healing slowly than it should have.

All the best to you
Debby

Hope all goes well for your sister! Keep us posted!

Hi All,

I was officially diagnosed with Mycosis Fungoides several years ago, after several years with symptoms and not knowing what I had and just guessing at what it could be and even under a doctors care. Until, finally I saw a Dermatologist and then forwarded on to a local Cancer Research clinic.

I have a rash all over my body, worse in someplace than others and those places are usually my butt and the backs of my legs (where i sit) and my feet and lower torso, but again all over at some degree.

I am searching for feedback from everyone possible on your experience and particularly how you manage your skin for this on a regular or semi regular basis.

I feel like the that heat and pressure seem to aggravate or cause flare ups. as mentioned above worse on my backside and feet, depending on foot wear, anytime I wear a dress shoe, leather, more heat, long days like that.

Seems certain foods aggravate it. and causes more itching on top of the rash. Chips in general, certain cookies (brands of foods?)

Anyone have input on how alcohol and canabis effect symptoms or levels of aggravation?

I will leave it at this for now. New to the group as well so hoping to hear some good advice or just feedback.

Thank you,

I am so fortunate with my Mycosis fungoides which I call CTCL, as I was diagnosed very early - stage 1a. Never happens but my dermatologist who has been seeing my skin for over 10 years noticed that a lesion had changed. I am using the light box (UVR) treatment successfully but it is very early days. I have not changed my diet, do not believe either cannabis or alcohol impact my symptoms either. I am followed closely by dermatology and oncology and am doing fine except it is not even a year. If you go onto the website for CTCL, there is tons of information that may be helpful. I am not itching but my skin is so fragile that I barely touch it and I have a bruise or an open wound. It is hard to cope but the doctors cheerfully tell me, this will not kill me. I hope this is helpful

Looking for anyone who has this type of lymphoma, my 16 year old daughter was just diagnosed on Monday.
We have already been dealing with this for two years, only the lymphoma has only now presented itself.

Hi @innocentlee, welcome to Mayo Clinic Connect. I moved your discussion to the Blood Cancers & Disorders support group. I'd like to invite @dws1968 and @shari715 who have recently talked about their diagnosis of mycosis fungoides on Mayo Clinic Connect and they may be able to share some of their story with you as you face this new diagnosis with your daughter.

@innocentlee, it sounds like you have been dealing with symptoms for a few years now, now that you have a diagnosis have any options for treatment or management been discussed moving forward?

Hi, I am so sorry about your daughter. However, when I was diagnosed my Dermatologist told me this is a slow growing cancer and it is not lethal. However, I was diagnosed very quickly with Stage 1 A. I did all the testing and the Oncologist was also amazed CTCL was at such an early stage. I am not on chemo. Just using a special light box in my home. My Dermatologist has a client who has used the light box for 20 years. To complicate things, I had Non-Hodgkin Lymphoma 35 years ago. The doctors are not sure there is a connection. It is great there is treatment and medication but having chronic cancer is just like having any other chronic disease. Just one step at a time.

My husband is being evaluated for this and has an appointment with anMF expert in the Northwestern University Chicago area in February but we are on a wait list. The local derm did a biopsy and he suspects it but it says eczema. Hopefully the expert can sort it out.

I was treated for eczema but my Dermatologist was concerned and took a biopsy. I know the sample went to at least two different pathologist before a diagnosis was made. That took a month. However, it took almost 3 months to do the staging - oncologist appointment plus PET scan. I started treatment - light box right away before even seeing the oncologist. Hope this is helpful.

Hi all
My 33 yr old son was diagnosed in July with CTCL/MF. He had "eczema" for about 7 years and had a spot on his back that was the size of a quarter. He went to a couple of different dermatologists over the years being treated with many different creams, a cortisone shot or 2 and 3 differed Biopsies and then the last one done in July of 2023 in NYC came back that he has CTCL. It is scary, we have so many questions that have not been answered. To top it off they have Not come up with a treatment plan. The spot on his back is now 4" x 7" and looks like he was burned with an iron. (its the only way to explain the look) He had a PET scan and all organs are clear.
He is going to one of the best hospitals in NYC and I am at a complete loss. Some of you are being treated with a light box, I was wondering how quickly the Dr came up with this treatment plan? My son has an appointment again on November 7th with both the Dermatologist that specializes in CTCL and the oncologist. If we dont walk out of there with some sort of plan and answered questions we are going to have to go elsewhere where we can have another doctor help us maneuver through this new life.