Anyone have Cutaneous T Cell Lymphoma?

I’m sorry you have this. I have been diagnosed with CTCL in February this year. If you don’t mind me asking what is the slightly different cell type? All the best to you. Sherrie

Hi
If you read through comments I have shared my sister’s experiences. She had ten radiation treatments on one lesion. The others lesions had biopsy done.
The lesions are like yellow flaked skin with a small similarity to a wart.
I have had many questions answered on this forum. I was so worried about her.
She was a sun worshipper in her youth, she is 72 now. So far under control.
She has a blood specialist watching her results. I feel fortunate she is getting treatment but she is not out of the woods yet, with potential lesions not tested yet. I wish you all the best! This forum is very helpful and I am grateful how responsive people have been to share stories and experiences.

@somde, can you share your diagnosis & treatment journey with us? In 2017 I was diagnosed with psoriasis and was being treated with biologics without much success. In summer of last year my WBC spiralled to 10x normal level & I was referred to a haematologist who, after blood work, diagnosed T Cell lymphoma & sent me to an oncologist who, after several tests diagnosed the Sezary. Treatment started end January.
Very pleased to have a cancer clinic in close proximity to us.
Knowing the extent of the symptoms of this illness I sympathize with anyone affected. There may not be a cure but we know that it is treatable.
Not life threatening, just life changing. Stay positive, you will get through this.

Thank you. I have already been part of many discussions.

Although we all have some disorder to discuss, we have to be empathic to all suffering and be supportive even if we listen to a story. It all helps us in many ways. Especially that we are not alone. I also am from Canada.

I was diagnosed with Sezary Syndrome in January 2023. I live in Canada & to date I have received excellent care & attention. Started my treatment with Methotrexate & ECP, advanced to Chlorambucil, Brentuximab & most recently Mogamulizumab.
Too early to see significant results with the Moga but everything I read is positive.
This sites purpose should be to discuss symptoms, treatments & successes not complain about our health systems.

I have multiple posts on the Mayo site. I think I have explained my history reasonably well. I am somewhat unique because I was diagnosed with Stage 1A which is unusual. I am also receiving light box treatments in my house which is very convenient. The biggest issue (seems strange to say this) but travel is difficult if I am away for more than a week or two. My other issue is my skin is fragile from a combination of dryness and light treatment. Let me know if you have specific questions.

Welcome @dgbucher, as a family we are still trying to get a full diagnosis but this has been mentioned to us and we have been advised to read up about it.

Please let me know how you finally got your diagnosis.

Hope the treatment they are discussing works well for you.
All the best.

Welcome, @dgbucher. To help you connect with other members living with cutaneous T-cell lymphoma, like @innocentlee @dws1968 @bradders @somde @shari715 @charlenekeogh and more, I moved your question to this existing discussion:

- Anyone have Cutaneous T Cell Lymphoma?
https://connect.mayoclinic.org/discussion/cutaneous-t-cell-lymphoma/

I look forward to getting to know more about you. What symptoms led to your diagnosis? Have you talked about a treatment plan with your care team yet? How are you doing?

Does anyone here have cutaneous t-cell lymphoma? I was just diagnosed with it last week.