Anyone have Cutaneous T Cell Lymphoma?

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

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.

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?

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.

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.

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

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 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.

Thank you! I appreciate you taking time to reply.

Gary