Anyone have Cutaneous T Cell Lymphoma?

Hi @kbirt, Welcome to Connect. I’m sorry to hear you’ve been struggling with Cutaneous T Cell Lymphoma for over 10 years and not finding much relief. There are a number of other treatment options that can help get this under control.
I’m wondering if you’ve been offered light therapy treatments, medication besides skin creams or photopheresis?

I am so sorry to hear of your experience. I have only had the disease for a year and it seems to be under control with the light treatment three times a week. My skin is generally terrible, so dry and fragile. I have tried so much stuff and very little works. I use no perfume Dove for showering and that helps a bit. Did you have chemo. I am lucky as I have the light box in my house and can manage transportation and such. What advice do you get from your dermatologist and oncologist.

I have been living with this condition now for over 10 years. It is progressively worse every year. I am shedding skin cells in my bed and all over the house. There is very little of my body that is mot affected. I have a wide black band around my abdomen and both palms are black. I have tried all kinds of lotions (watch out for the alcohol in them!) including coconut oil. Only a short-term relief. I have tried allergy pills to help with the itch. I also have advanced macular degeneration and can no longer drive. I am 77 this year and trying to set up appointments and get transportation is a nightmare for me.

Hi. I am using a light box from UVB from National Biological three to four times a week. It is much easier having the equipment in my house. My insurance company paid for some of the light box - which is not actually a box and the rest was out of pocket. I was only diagnosed about a year ago. I am hoping I will not need chemo etc.

Thanks for writing. I am happy to hear that you have been Stage 1A for 10 years with no treatment. I think the oncologist is being more cautious because I have a history of NHL. The cell type is different but I can’t get an answer whether the cancers are related. I am coming up to my one year anniversary so I will just go with the flow.

Sherrie, what treatment are you currently undergoing?

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.

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

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.

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.🙏