Anyone have Cutaneous T Cell Lymphoma?

Just over a year ago I was diagnosed with Sezary Syndrome which is a rare form of T Cell Lymphoma.
First line of treatment was Methotrexate & ECP. When slow to respond I moved on to Chlorambucil then to Brentuximab.

Currently on Mogamulizumab with ECP but unfortunately I have developed a rash & have become diabetic so expecting to discontinue.
Anyone else have similar experience? And what was next step?

I have the other type of CTCL and have not needed medication. You are on some serious stuff. I am hoping to avoid all drugs because I have already had a huge amount of chemo for non-Hodgkin lymphoma a long time ago. I find the best information (after doctors) on the CTCL website. It is not an uplifting site but I was impressed with the information. Good luck.

My sister has a benign form of CTCL called Lymphomatoid Papulosis. It’s rare ( one in a million) and can develop into CTCL or systemic lymphoma.
National Organization of Rare Diseases ( NORD) and the NIH have information on this and other CTCL. I’m curious why you’re considered at risk for CTCL

I am a 58yr old male that was diagnosed wit CTCL last June. This after many years of treatment of this area and others as I have mild eczema rashes on elbows, arms etc. The CTCL area is on the back of my upper legs (no sun) and would not respond to creams the same as other eczema rashes. Basically the area stayed red-ish/pink and bumpy regardless of treatment. So after many different eczema treatments the area was biopsied and diagnosis confirmed with blood test. I was told I will always have this condition but it should not affect my life generally, no decrease in life span generally. I do wonder if it could later complicate and combine with other cancers if I develop something.

Happily my current treatment is two different steroid ointments (ointments have always worked better for me on eczema than creams), each for two weeks alternating. Also to supplement with 20 minutes of sun a few times a week in the summer (live in NE). The area has improved significantly over the past 10 months by sticking to this treatment program - it is fainter now and hard sometimes to identify where to apply ointments. It never really itched or spread so that isn't wasn't a problem. I'm hopeful that some upcoming sun exposure might further reduce the rash as that helps my eczema each year, dry heat in winter bad, warmer weather colder showers and some sun helps.

I think the rash worsened when I was in my 20's and didn't treat the eczema for many years while in school or existing without real health insurance.

I was diagnosed about 18 months ago. It is very helpful to have a UV light box in my home. I use it three times a week and do not require any creams or medication. Creams and chemotherapy may be necessary but right now I am stable. Seems like you have a good team and a great treatment plan.

Did you have a biopsy that said Psoriasis? Just curious as my husband is being treated for psoriasis but hematologist is now involved and running tests.

Hi. I was never diagnosed with Psoriasis but Eczema. My dermatologist thought that there had been a significant change in a lesion at the back of my leg. When he did the biopsy and after multiple pathologist had looked at the sample I was diagnosed with CTCL. Interestingly if you read through all the postings most people were diagnosed with some type of skin disorder before being diagnosed with CTCL. I now see a a dermatologist and a hem-oncologist. Hope this helps.

Yes, I had a biopsy in 2017 and was diagnosed with Psoriasis. I went through 3 biologic med regimes. Taltz, Tremfya & Skyrizi. None cleared the issue which was primarily hands & feet.
Wasn’t until my WBC started to spiral that the diagnosis became T Cell Lymphoma

Thank you! This is a recent development but it is everywhere mostly torso upper legs and arms. The itching is very bad and he is to receive his first skyrizi injection today. It was biopsied as psoriasis but from the beginning I’ve thought there may be more to it. We see hematology Monday.

Yes since 2015.