Anyone have Cutaneous T Cell Lymphoma?

My husband has CTCL, diagnosed about 5 years ago.
Entered a drug trial at UAMS and it worked but still has to be approved by FDA. He has gone from two weeks per month to one week of IV of this drug. He had it several years and was treated as eczema. This is a tricky one to diagnose. We feel like it is finally under control.

I do think once you have had all the blood work and a PET scan, the oncologist can stage your cancer. The light treatment in my home is very helpful. The company National Biological can be reached at 1-800-338-5045. The doctor ordered the machine - it is considered medical equipment and it is delivered to your house. Out of pocket payment and other issues are decided by your insurance and doctor. It’s nice to have a home treatment. Good luck.

National Biological numbers are 1-800-338-5045 or 216-831-0600. They were very helpful. Insurance companies and doctors need to be involved in the process.

For 4 years I was being treated for psoriasis. Know how frustrating it can be. Are you able to identify the drug and tell us how long your husband has been treated with it. Also, any trials prior to this?

E7777. He started in 2021 and is still receiving the drug.
It has been very effective in treating his symptoms.
The diagnosis is difficult and his was also treated as psoriasis and eczema. Google E7777 for more information. We were fortunate to have gotten into the study.

How did you appointment with the oncologist go, @lauraellis8? What are your next steps?

Received diagnosis in January this year after being improperly diagnosed as having psoriasis then being told I was allergic to medication I was taking! Stage 2b, received 6 doses of Adcetris from February-June which cleared -up my open wounds, stopped my horrendous lymphoma itching and stopped the major leaking (lymphoma sweating). I’m on a new chemo to clear up the skin-it covers my torso and my back still is majorly discolored BUT I am better than 6 months ago! It just takes time and I am a bad case so don’t judge yourself by me! Just be patient and follow your doctor’s orders-Pet scans have been negative so no cancer inside, just in my T cells. Be well!

God bless you! You have been through so much!
My sister had 6 radiation treatments and it seems to have worked. Scares the heck out of you! Thanks for sharing. Be well and take care of yourself! Debby

I am aware how fortunate I was to be diagnosed Stage 1. I think it is worthwhile for the general public to be aware of misdiagnosis of skin conditions. I believe the light therapy may be able to keep me at Stage 1. Chemo, radiation are just not fun but it is amazing if you beat it.

Thanks!