1. < Blood Cancers & Disorders

Anyone have Cutaneous T Cell Lymphoma?

Posted by cindylb @cindylb, Jul 28, 2017

Does anyone in the group have Cutaneous T Cell Lymphoma? I am waiting for an appointment with my oncologist (follow up for breast cancer) and am at possible risk for this cancer. I'd like to hear from anyone who has experienced these symptoms, how they got their diagnosis and what treatments they have or are having. Thank you.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

somde | @somde | Sep 28, 2023
In reply to @norseman44 "Googled Belecodaq and it would be used in the treatment of Peripheral T Cell not Cutaneous?..." + (show)
@norseman44

Googled Belecodaq and it would be used in the treatment of Peripheral T Cell not Cutaneous? Is that what you are being treated for?

Jump to this post

My sister is being treated for T cell lymphoma on her arm.
They are used radiation, which involves magnetic and electrical
source that travels at the speed of light. Done in hospital. 5 sessions so
far
but going to do another biopsy as healing slowly than it should have.

All the best to you
Debby

REPLY
1 reply
scoeyjr | @scoeyjr | Sep 27, 2023
In reply to @norseman44 "Googled Belecodaq and it would be used in the treatment of Peripheral T Cell not Cutaneous?..." + (show)
@norseman44

Googled Belecodaq and it would be used in the treatment of Peripheral T Cell not Cutaneous? Is that what you are being treated for?

Jump to this post

It can be used for mine as well per my oncologist-she’s the expert in all things blood cancer in my area-unfortunately it is only 30% effective but if it works-it works. There are other chemotherapy options including pills, but she wants to give this a chance through end of year. I’d be happy with a 50% improvement in my skin!

REPLY
norseman44 | @norseman44 | Sep 27, 2023
In reply to @scoeyjr "I’m up to 80% of it (Beleeodaq is the brand name I believe-can’t remember the proper..." + (show)
@scoeyjr

I’m up to 80% of it (Beleeodaq is the brand name I believe-can’t remember the proper spelling!)-it still sends me to “outer space” a bit and a little nausea but I’m able to drive home and go to work next day. Skin seems to be responding so another 3 months! Wheee! Thanks for asking!

Jump to this post

Googled Belecodaq and it would be used in the treatment of Peripheral T Cell not Cutaneous? Is that what you are being treated for?

REPLY
2 replies
somde | @somde | Sep 27, 2023

Oh, okay. I did not realize that. My sister had to go to the hospital for her radiation. Thanks!

REPLY
shari715 | @shari715 | Sep 26, 2023
In reply to @somde "Ask about radiation." + (show)
@somde

Ask about radiation.

Jump to this post

The light box is UV radiation.

REPLY
1 reply
shari715 | @shari715 | Sep 25, 2023

Good to know. I am hoping to avoid chemo. But it is not likely. My dermatologist says the lights should keep the disease at bay but oncologist says he will need to prescribe chemo at some point.

REPLY
scoeyjr | @scoeyjr | Sep 25, 2023
In reply to @colleenyoung "@scoeyjr, how is the new chemo regimen working for you?" + (show)
@colleenyoung

@scoeyjr, how is the new chemo regimen working for you?

Jump to this post

I’m up to 80% of it (Beleeodaq is the brand name I believe-can’t remember the proper spelling!)-it still sends me to “outer space” a bit and a little nausea but I’m able to drive home and go to work next day. Skin seems to be responding so another 3 months! Wheee! Thanks for asking!

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 21, 2023
In reply to @scoeyjr "Received diagnosis in January this year after being improperly diagnosed as having psoriasis then being told..." + (show)
@scoeyjr

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!

Jump to this post

@scoeyjr, how is the new chemo regimen working for you?

REPLY
1 reply
shari715 | @shari715 | Sep 13, 2023

I am sorry. I thought I had replied. I do have a light box in my house. It is from a company called National Biological. It is a Phototherapy device with Narrowband UVB lamps. Phone 216-831-0600 or 1-800-338-5045. The staff and the owner are extremely helpful and pleasant. My insurance company would not initially pay for it but in the end after multiple calls by myself and the company agreed to pay for most of it. It is a pleasure doing it in my house. I was only diagnosed at the beginning of the year but so far no new lesions. Good luck. Let me know if you need more information

REPLY
View MoreView Less
Please sign in or register to post a reply.