Anyone have Cutaneous T Cell Lymphoma?

Hello- I know I'm 2+ years after your posting this, but I have a rare skin disease called Lymphomatoid Papulosis. I have had it for almost twenty years, but was misdiagnosed for 9 years. Finally I demanded my derm do a biopsy and it came back as LyP (abbrev). They say 1-2 people in a million have it, but I think people are just getting misdiagnosed. I have learned what my triggers are and can say right now I am in remission. I would have red bumps or papules on my stomach, abdomen and back. Occasionally a few would pop up on my arms or legs. They were SOOOOO itchy! I would scratch where they would bleed a bit, scab over and leave a tiny scar. When I was finally diagnosed with it- they knew so little about it- there were no "types". Now, after a lot of research, I believe I am type A. There is a facebook page for it if anyone thinks they may have it. Before my definitive diagnosis, I was told I had dermatitis, allergy to Bounce fabric softeners, Folliculitis. I know my triggers- Stress is the biggest. I wear cotton clothes only- nylon, poly, silk, rayon- forget it! A jacuzzi tub with the jets of water spraying directly on my back- outbreak. My last back massage- felt great, but as I was getting it I could feel the bumps begin to erupt on my stomach- sure enough there they were afterwards! So- I attribute that to either the oil she was using - but I think it was the direct constant friction of skin to skin contact. When I have outbreaks I use Clobetasol foam (the cream is like ointment-very greasy). Some people have other types (B-F) and have it much worse than I do. They say people with LyP have a 20% greater chance of developing Lymphoma. For now- I am good, and no outbreaks! Good luck to all!

Hi. My husband is 58 and we noticed some rashly looking patches on his skin and after a biopsy, it turns out he has CTCL, stage 1. I would find it comforting to have a connection to someone who has a similar diagnosis. It seems we have caught it early and he has started with some steroid creams. We haven't had the blood test yet but that's next. If you are interested in connecting to chat about this, I understand it is somewhat rare, so it would at least be helpful to share experiences. Thanks.

Hello @madisong Welcome to Mayo Clinic Connect. Cutaneous T Cell Lymphoma is a bit of a rare condition. I didn’t find many members in our forum but we do have a couple in this discussion. It is an older discussion but I’m going to tag the members and hopefully they’ll pop back into the conversation so that you and your husband can get some suggestions and feedback.
In the link provided below, fellow members,
@cindylb @carlos12 @dee081772 @taddyp have all talked about their experience with CTCL, though I believe Cindy’s diagnosis was changed later.

Cutaneous T Cell Lymphoma
https://connect.mayoclinic.org/discussion/cutaneous-t-cell-lymphoma/
Here are a few informational articles about CTCL you might find helpful.
https://www.mayoclinic.org/diseases-conditions/cutaneous-t-cell-lymphoma/symptoms-causes/syc-20351056
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https://www.oncolink.org/cancers/lymphomas/cutaneous-t-cell-lymphoma-ctcl/cutaneous-t-cell-lymphoma-ctcl-staging-and-treatment
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https://my.clevelandclinic.org/health/diseases/17940-cutaneous-t-cell-lymphoma
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https://lymphoma.org/understanding-lymphoma/aboutlymphoma/nhl/ctcl/
It’s really positive that your husband got an early diagnosis. From my understanding most cutaneous T-cell lymphomas grow very slowly and aren’t life-threatening. He had the biopsy so now you’re waiting for blood work. Is the steroid cream helping his symptoms?

Thank you for the reassuring words. The cream works remarkably quickly. I noticed a change within hours. I'm glad I found this forum where I can connect with people who have experience with CTCL. It is so rare that his doctor had never heard of it. Wondering if we should be seeking a specialist to follow him or if it is just something people live with?

A second opinion never hurts. I was just looking through the Mayo registry to determine what specialist is best for this type of cancer…hematologists or dermatologists. I’m seeing on our Mayo site that there are dermatologists who specialize in Cutaneous T-cell Leukemia.

Just to give you an idea for what to look for in a specialist here is the list of Mayo doctors: https://www.mayoclinic.org/diseases-conditions/cutaneous-t-cell-lymphoma/doctors-departments/ddc-20351058?page=2#e60ad0d0bc354936a881a57de90ea8a3

If you’re interested in visiting any of the 3 Mayo campuses here’s a quick link to get you started with an appointment request. http://mayocl.in/1mtmR63

As I mentioned before, I don’t see many discussions in our forum for CTCL but it is a condition that is more prevalent that reflected here. So you may be able to find a specialist nearer your home. This will be a lifelong condition but fortunately there are medications which can slow the progression. The steroid cream sounds like it’s been a game changer already.
But you’ll want to make sure your husband is seeing a specialist who will follow him closely.
Is this his primary care provider who is treating him?

I have just been diagnosed with a T cell lymphoma of my skin. Crazy. Interestingly I have a remote history of non-Hodgkins 1988. Went through all the treatment - surgery, chemo, radiation. I wonder if the two are related. I was basically declared cured in 2000. So I have not needed to see an oncologist for over 20 years. I know my Lymphoma was small B cell type but this was in the day with minimal genetic/cell typing. If you are counting I have been cancer free for 35 years. Excellent but now what. Any information will be helpful

Hello @ shari715, welcome to Mayo Connect. This is a great forum to meet other people who share the same diagnosis. It can help to feel that you’re not alone. There are a couple of members who also have Cutaneous T-Cell Lymphoma.

@cindylb started a discussion in 2017:
Anyone Have Cutaneous T-Cell Lymphoma?
https://connect.mayoclinic.org/discussion/cutaneous-t-cell-lymphoma/
That link will take you to the discussion where you can follow along with other members and their comments. It does start with the oldest from 2017. You can reverse the order by looking under the opening statement to see a box that says, Oldest to Newest. Simply click on there to switch.

I wrote this reply to another member a few weeks ago who was recently diagnosed with CTCL, @madisong. It’s further along in the same discussion and contains several reference links.
https://connect.mayoclinic.org/comment/807495/
Hopefully you’ll find some encouragement and good information with the conversations. Don’t hesitate to tag any of the members by replying in their comment or using their @name.

Have you consulted with a hematologist/oncologist yet?

My sister had a biopsy off her right arm and this was the diagnosis?
The doctor checked all her lymph nodes and found they were okay.
He is referring her to an oncology doctor. Does anyone know what type of treatment for this. Many thanks!

Hello @somde I think your questions will be better answered in the Cancer Support group. I will ask a moderator to move your question so you can meet others and participate in the discussions

Welcome @somde. As @becbuddy suggested, I have moved your post about treatments for cutaneous T-cell lymphoma to this exisiting discussion in the Blood Cancers support group:
- Anyone Have Cutaneous T-Cell Lymphoma?
https://connect.mayoclinic.org/discussion/cutaneous-t-cell-lymphoma/
I did this so you can read previous posts and connect easily with other members like @shari715 @madisong @cindylb @dee081772 @grandpabob and others.

Somde, luckily there are many treatments are available for people with cutaneous T-cell lymphoma. Which treatments are best for your sister will depend on her particular situation, including the extent or stage of the lymphoma. Most people receive a combination of treatments for cutaneous T-cell lymphoma. Read more here: https://www.mayoclinic.org/diseases-conditions/cutaneous-t-cell-lymphoma/diagnosis-treatment/drc-20351057

It is hopeful that the cancer was caught early since it was not detected in the lymph nodes. When does your sister see the oncologist to learn more? How are you doing?