Anyone have Cutaneous T Cell Lymphoma?

Sherrie, what treatment are you currently undergoing?

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.

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.

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.

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.

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?

While I was still able to drive, I was being treated by a dermatologist and receiving light therapy treatment. Although it did help somewhat, I had to quit when I could no longer trust my vision and ability to drive. Although my dermatologist misdiagnosed me three times before another biopsy said it was sub-cutaneous T Cell Lymphoma. She did try to get an in-home light box for me, but SS would not pay for it. Due to my whole-body condition, I require the full enclosed light box.
So far, I find that although you can live with this condition, it is far from pleasant. I am very intolerant of cold weather as it sets pins and fiery needles sensation in my arms and legs. I am pretty much a recluse all winter and only venture out when temperatures rise above 70. (Sorry for the long note. I guess I suffer from boredom and loneliness too.)

Hi @kbirt, now that you’re part of our Connect family, I hope you won’t feel quite so lonely. There’s always someone around for a good conversation. ☺️

It’s really a shame you weren’t able to get a light box so that you can have treatments at home. I know getting around is difficult since you can’t drive anymore. I had a couple thoughts on that…
The American Cancer Society has Road to Recovery, which is a free ride service for cancer patients. I wonder if this is something that might work for you so that you can continue treatments on a routine basis. Here’s the link to their page online.
https://www.cancer.org/support-programs-and-services/road-to-recovery.html
Also, most cities have Uber or Lyft driver services. These are reasonably priced services that can do anything from delivering groceries to taking people to appointments, shopping, airport transportation, etc. It’s pretty easy to use. It does require an app to be on your phone but scheduling is really simple.
Would this be something you could manage?

I am so sorry. Getting the light treatment at home was a major difference and I was lucky because I drove the insurance company crazy until they agreed to pay. I as also fortunate in my diagnosis as my dermatologist diagnosed it when I basically had few symptoms just a suspicious lesion in my leg. Where do you live? Are there transportation services? Can someone drive you? What is the oncologist saying? No worries about long posts. Loneliness is terrible so feel free to reach out.

Thank you for your concern. It is nice to know that I am not alone. I always say that I have been very lucky as there are a lot of people out there that have bigger problems than me. I live in Franklin, IN. Since SS is my only source of income, I do have to watch my spending. Unfortunately, I have always had to put off any health care for myself. I am twice widowed with both Wifes dying of major diabetic complications.
I must say that this condition is somewhat confusing to me. The final diagnosis from my dermatologist was Sub-cutaneous T-cell Lymphoma. I would assume that 'Sub' would mean under the skin. I think this was an error on her part. Also confusing is whether this is a cancer or not. Since cells are being changed and told to attack skin, it would sound like a cancer tome. And yet, I read that this is not a skin cancer:
Cutaneous T-cell lymphomas: These lymphomas start in the skin but are not a type of skin cancer. They account for about 5% of all lymphomas and include conditions like mycosis fungoides and Sezary syndrome23.
Regarding transportation, I have just changed my health plan this year and have not had a chance to try it out. My former plan included transportation, so I made an appointment and the day before my appointment they called and said it was not available in my area. I had to cancel. I have one daughter, two young adult granddaughters and son-in-law all with their own problems and too busy for me. Whatever, life goes on and you deal with what life throws at you. There is always tomorrow until there isin't.