Anyone have Cutaneous T Cell Lymphoma?

I have a light box from National Biology. It is Panosol II. 31 nm Nbuvb. The doctor’s office was charging me $ 40 for my co-pay. Pretty expensive lifetime payment. It is also so much easier to do it at home. It is different from the doctor’s office as their machine is a booth and it does your whole body. Good luck.

Shari715

Good to hear your ctcl is undee control. I, too have stage 1 MF. Treated with uvb at the dermatologist office it is under control. I'd like to treat at home with lights. Can you share the brand/model you are using?

Thanks, Gary

Thanks so much! I wish the same for you too!🙂

Hi. I was recently diagnosed with CTC lymphoma. Interestingly, I was diagnosed with Non-Hodgkin lymphoma in 1988. I had tons of treatment - chemo and radiation. I had no issues for 35 years and the was diagnosed with CTC lymphoma. The oncologist does not know if there is any connection. In 1988 the doctors had no genetic information so it was very different. Good luck. I hope all works out.

Thank you for this important information. I am happy to read you are finally getting some relief. It sounds like you have been through a lot!
My sister has Cutaneous T Cell Lymphoma.
She is stage one. She has had 4 radiation treatments on the sore on her skin
(nasty looking). Her bloodwork is now normal. (Had low white blood cell count). Her scans were also clear. Praise the Lord! I am so grateful!
I have heard from so many people with stories about their own battle with skin cancer and much support. I am so appreciative of this Mayo Clinic site.
Thank you everyone. God bless you all! Debby

As previously mentioned, my T- cell lymphoma is sub type Sezary Syndrome,, which attacks the blood & skin. After 18 sessions of the blood treatment, ECP, my white blood cell count is back in normal range & 2 weeks following my IV infusion of Brentuximab my itching has been reduced quite significantly and skin rashes are clearing. Predictions are that itching will have disappeared after my second session next week.
For the itching I have found that a mixture of a tube of hydrocortisone, anti-itching ointment in a jar of Glaxal base cream offered best results.
Truly sympathize with anyone suffering from the itching resulting from this condition. Created a name for it, CSD (Compulsive Scratching Disorder.)

Hi. I am very lucky as I have minimal itching. To prevent this I use Dove bath products and a ton of very expensive lotion. My favorite is M-61 Vitablast C body butter. My skin is such a mess because of the light treatments. Hope this helps. Currently I am only stage 1 so maybe that is why I have less itching. Good luck. Hope this is helpful.

What are you doing for the itching? I have the same t-cell lymphoma and MGUS.

About 6 months ago I was diagnosed with Sezary Syndrome, a rare form of T-Cell Lymphoma. First and most prominent symptom was scaling of hands & feet , upward spiral of White blood count and excessive itching. First line of treatment was oral dosage of methotrexate & ECP, a blood treatment process. The drug was later changed to Chlorambucil. With slow results my future may involve IV dosing with brentuximab & some radiation.
Very much like to hear from others with Sezary & their treatment success

Wow. I am so sorry. My dermatologist noticed something strange on the back of my leg during a biannual routine checkup. I think he was able to spot the difference because he sees my skin often. I was shocked with the diagnosis. I saw an oncologist who did PET scan and blood work. I was so happy it was stage 1. I am doing UV radiation 3 times a week. My doctor was amazing and worked with my insurance for me to purchase the equipment for my house. None of this has been cheap but now I am set up it should be okay. This is the second time I have had cancer - I had a non-Hodgkin lymphoma. This involved chemo and radiation 35 years ago. I was not happy with another cancer diagnosis but at least it is stage 1 and not stage 3. I know that my Cutaneous T-cell lymphoma will most certainly require chemo, surgery, radiation. I know the oncologist could not believe I was only Stage 1. It is very unusual. What you describe is the expected course. Hang in there. Cancer is not fun but if you have a good team of doctors, excellent health insurance, family, and friends for support it does make life slightly easier. My insurance does not cover care at Mayo. Feel free to stay in touch.