Anyone have Cutaneous T Cell Lymphoma?

Thank you so much. The CLfoundation.org was very helpful just in watching 1 video. It definitely put my mind at ease.
I will definitely keep everyone posted.
@innocentlee please let me know how your daughter makes out. They say it is rare for my son to have this at 33.

Thank you @sharie715 I will definitely be reaching out for guidance, information and knowledge.

I am sorry about your son. Cancer when you are a young adult is not fun. I have multiple posts on this site which may be helpful. The first thing you need to know is the Stage and only then can there be a treatment strategy. Let me know if I can help.

Welcome to Connect @charlenekeogh. You found the right discussion group with members who also CTCL such as @shari715, @dws1968 and newer members @penn1023, @innocentlee, who are in a similar period of waiting for a diagnosis and possible treatment options. Maybe @shari715 will be able to talk to you more about light therapy.

It’s frustrating that it took so long for a correct diagnosis for your son but it seems to be a common trait. I found a good article about CTCL from the Cutaneous Lymphoma Foundation that might provide you with some useful information.

Cutaneous Lymphoma Foundation
https://www.clfoundation.org/

Hopefully your son’s meeting with the two specialists in November will get him on a path to treatment. Will you please let us know what he finds out?

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.

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.

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.

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.

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?

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.