Anyone have Cutaneous T Cell Lymphoma?

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.)

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

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.

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

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

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.

Thank you! I appreciate you taking time to reply.

Gary

I have a different, b-cell subset (PMZCL), but I believe it can be treated with phototherapy, too. Would you mind sharing the cost of your home unit?

I visited the National Biology site to check, but did not see that particular model unit listed, nor were any prices posted at their site. Great that you can do your phototherapy at home.

Thanks for posting about it.

Hi Georgie

I do not have a unit. Maybe you were thinking of someone else’s post.
My sis was treated for her T-cell with radiation therapy at hospital. 5 treatments over 5 weeks. All the best!

I have just been diagnosed with this week. Seeing the oncologist on Friday. Thanks for posting this question, looking forward to reading the responses.