Anyone have Cutaneous T Cell Lymphoma?

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

@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.

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.

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

I have CTCL and it was confirmed with biopsy. I was given an ointment and told to sit in sun a few minutes with lesions exposed. It has helped with my lesions. Best wishes. Sherrie

Hi. I have mycosis fungoides which is a common type of CTCL. I am not an expert on treatment or the differences in cell type. As long as the treatment continues to work I am happy.

I have the same as you. I am only seeing primary care, dermatologist. I have asked if I should be seeing an oncologist. I feel really alone in this journey. I’m glad things are working for you.🙏

That is strange because my dermatologist was not even willing to order the PET scan and he admits he knows about light treatment but not about chemo. I know it is hard to get referrals and appointments with doctors but speak to your primary care. Find a hematologist who specializes in lymphoma.

Thank you. I have been having a feeling I should ask them again. Since February of this year when I was diagnosed, I have only been given ointment and I sit in sun. I noticed both ointment/sun helped with skin lesions but once they started to fade I got this pain in my arm like I am being cut with glass and I am exhausted, losing a little hair, loss of appetite and two months ago I had blood in urine. I feel it is lonely, unknown scary journey. I am grateful for you reaching out and this group. Best wishes for you and all with the journey they are on. Sherrie

I was diagnosed with Mycosis Fungoides maybe 10 years ago and have never gone past Stage 1A. I am not doing lightbox treatment because I have a history of a bit of melanoma. I see a specialist every six months who tells me not much has changed. What's interesting to me is that I think I had this 45 years before the dermatologist I'd been seeing for years decided it was MF and did a biopsy. The original rash appeared all over my body when I was 11, which was humiliating, and there was no explanation for it. It eventually went away except for places that don't see the sun. Honestly, though, after breast cancer, Long Covid, and a few other illnesses like Ehlers-Danlos Syndrome, this one is the least of my worries.