Anyone have Cutaneous T Cell Lymphoma?

@shari715 do you use a chemo cream with your light box? My son is seeing his Dermatologist and oncologist on Nov 7 and I want to ask about some treatments. As I said in my initial post, we have pretty much have been left in the dark about this rare lymphoma. I am really hoping he will get staged at this visit and given a treatment plan.
How does everyone feel about Clinical Studies? My son is 33 and nothing has been talked about in going forward But, the oncologist called and wanted to put him in a clinical study that was just approved in June. There are not enough people with CTCL/MF in our area to have completed this study. They need 20 people to sign up for it and they don't have 20.

Hi @buddoc, welcome. How long has it been since you stopped UVB light treatments? Have you talked with the dermatologist in the meantime? Might you be able to start light treatments again?

Hi. That is very interesting. My dermatologist has said I would need light treatment for the rest of my life. Neither dermatologist or oncologist can say when I would be in remission and how they can tell if the disease is progressing. With my non-Hodgkin lymphoma it took 24 years before an oncologist stated I was in remission and did not need any more scans. Now I am back to having scans, appointments, blood work etc. I hope the doctors find a reasonable treatment strategy for you.

I have CTCL- MF. Initially, that is about 8yrs ago, I had 72 UVB light treatments ( phototherapy) which cleared the lesions, mainly on my legs. I stayed in remission until 4 months ago and started on steroid creams, which hasn’t been too successful. I’m waiting to see my dermatologist to consider further treatments. I am 80yrs and have multiple co-morbidities .

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.