1. < Blood Cancers & Disorders
Profile picture for cindylb

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.

Profile picture for shari715
shari715 | @shari715 | Jun 27, 2024
In reply to @norseman44 "Can you share the names of the steroid creams that appear to work for you. Others..." + (show)
Profile picture for norseman44 @norseman44

Can you share the names of the steroid creams that appear to work for you.
Others may appreciate knowing

Jump to this post

I am not using any steroids or any other ointment. I use a UV light box three times a week.

REPLY
Profile picture for pastorcorwin580
pastorcorwin580 | @pastororwin580 | Jun 27, 2024

I was treated by radiation on my feet and shoulder. It seemed to control it BUT I was told by my new oncologist that once an area was irradiated it was ineffective to radiate again. I use Clobetasol .05% to spot treat eruptions.

REPLY
Profile picture for Lori, Volunteer Mentor
Mentor
Lori, Volunteer Mentor | @loribmt | Jun 27, 2024
In reply to @pastororwin580 "Yes since 2015." + (show)
Profile picture for pastorcorwin580 @pastororwin580

Yes since 2015.

Jump to this post

Welcome to Connect @pastororwin580. It looks as though you were diagnosed with CTC in 2015. Would you like to share a little more about your experience? Are you currently being treated for the condition?

REPLY
Profile picture for norseman44
norseman44 | @norseman44 | Jun 27, 2024
In reply to @richsully "I am a 58yr old male that was diagnosed wit CTCL last June. This after many..." + (show)
Profile picture for richsully @richsully

I am a 58yr old male that was diagnosed wit CTCL last June. This after many years of treatment of this area and others as I have mild eczema rashes on elbows, arms etc. The CTCL area is on the back of my upper legs (no sun) and would not respond to creams the same as other eczema rashes. Basically the area stayed red-ish/pink and bumpy regardless of treatment. So after many different eczema treatments the area was biopsied and diagnosis confirmed with blood test. I was told I will always have this condition but it should not affect my life generally, no decrease in life span generally. I do wonder if it could later complicate and combine with other cancers if I develop something.

Happily my current treatment is two different steroid ointments (ointments have always worked better for me on eczema than creams), each for two weeks alternating. Also to supplement with 20 minutes of sun a few times a week in the summer (live in NE). The area has improved significantly over the past 10 months by sticking to this treatment program - it is fainter now and hard sometimes to identify where to apply ointments. It never really itched or spread so that isn't wasn't a problem. I'm hopeful that some upcoming sun exposure might further reduce the rash as that helps my eczema each year, dry heat in winter bad, warmer weather colder showers and some sun helps.

I think the rash worsened when I was in my 20's and didn't treat the eczema for many years while in school or existing without real health insurance.

Jump to this post

Can you share the names of the steroid creams that appear to work for you.
Others may appreciate knowing

REPLY
2 replies
Profile picture for kkbgma11
kkbgma11 | @kkbgma11 | Jun 26, 2024
In reply to @norseman44 "Yes, I had a biopsy in 2017 and was diagnosed with Psoriasis. I went through 3..." + (show)
Profile picture for norseman44 @norseman44

Yes, I had a biopsy in 2017 and was diagnosed with Psoriasis. I went through 3 biologic med regimes. Taltz, Tremfya & Skyrizi. None cleared the issue which was primarily hands & feet.
Wasn’t until my WBC started to spiral that the diagnosis became T Cell Lymphoma

Jump to this post

Thank you! This is a recent development but it is everywhere mostly torso upper legs and arms. The itching is very bad and he is to receive his first skyrizi injection today. It was biopsied as psoriasis but from the beginning I’ve thought there may be more to it. We see hematology Monday.

REPLY
Profile picture for norseman44
norseman44 | @norseman44 | Jun 26, 2024
In reply to @kkbgma11 "Did you have a biopsy that said Psoriasis? Just curious as my husband is being treated..." + (show)
Profile picture for kkbgma11 @kkbgma11

Did you have a biopsy that said Psoriasis? Just curious as my husband is being treated for psoriasis but hematologist is now involved and running tests.

Jump to this post

Yes, I had a biopsy in 2017 and was diagnosed with Psoriasis. I went through 3 biologic med regimes. Taltz, Tremfya & Skyrizi. None cleared the issue which was primarily hands & feet.
Wasn’t until my WBC started to spiral that the diagnosis became T Cell Lymphoma

REPLY
1 reply
Profile picture for shari715
shari715 | @shari715 | Jun 25, 2024

Hi. I was never diagnosed with Psoriasis but Eczema. My dermatologist thought that there had been a significant change in a lesion at the back of my leg. When he did the biopsy and after multiple pathologist had looked at the sample I was diagnosed with CTCL. Interestingly if you read through all the postings most people were diagnosed with some type of skin disorder before being diagnosed with CTCL. I now see a a dermatologist and a hem-oncologist. Hope this helps.

REPLY
Profile picture for kkbgma11
kkbgma11 | @kkbgma11 | Jun 25, 2024
In reply to @norseman44 "For 4 years I was being treated for psoriasis. Know how frustrating it can be. Are..." + (show)
Profile picture for norseman44 @norseman44

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?

Jump to this post

Did you have a biopsy that said Psoriasis? Just curious as my husband is being treated for psoriasis but hematologist is now involved and running tests.

REPLY
1 reply
Profile picture for shari715
shari715 | @shari715 | May 31, 2024

I was diagnosed about 18 months ago. It is very helpful to have a UV light box in my home. I use it three times a week and do not require any creams or medication. Creams and chemotherapy may be necessary but right now I am stable. Seems like you have a good team and a great treatment plan.

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