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.

shari715 | @shari715 | Mar 1, 2023

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

Lori, Volunteer Mentor | @loribmt | Feb 8, 2023

In reply to @madisong "Thank you for the reassuring words. The cream works remarkably quickly. I noticed a change within..." + (show)

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?

madisong | @madisong | Feb 8, 2023

In reply to @loribmt "Hello @madisong Welcome to Mayo Clinic Connect. Cutaneous T Cell Lymphoma is a bit of a..." + (show)

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?

Lori, Volunteer Mentor | @loribmt | Feb 7, 2023

In reply to @madisong "Hi. My husband is 58 and we noticed some rashly looking patches on his skin and..." + (show)

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
~~~
https://www.oncolink.org/cancers/lymphomas/cutaneous-t-cell-lymphoma-ctcl/cutaneous-t-cell-lymphoma-ctcl-staging-and-treatment
~~~
https://my.clevelandclinic.org/health/diseases/17940-cutaneous-t-cell-lymphoma
~~
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?

madisong | @madisong | Feb 6, 2023

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.

mroreo126 | @mroreo126 | Nov 2, 2019

In reply to @cindylb "Hello all.... I still have no firm diagnosis for my ongoing skin rash but thought I'd..." + (show)

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!

Bob, Alumni Mentor | @grandpabob | Oct 23, 2019

In reply to @dee081772 "Hi I just found out I have this, I am on Methotrexate 2.5mg 4 pills a..." + (show)

Hello @dee081772, I can relate to the shock of being told you have a life changing disease as I have been through a diagnosis of Large B cell Lymphoma. I would recommend that if possible, you contact your clinic or health care provider to get the information you are looking for. The reason I say this, is that I have personally found that in most instances conditions affect everyone differently. Usually, you’re health care provider is in the best position to provide you with meaningful information specific to you.
If you are looking on line, I would direct you to the Mayo Clinic web site where you can use the search function to get information on many health concerns.
Let us know what steps you are taking as we on connect are here to support each other as best we can.
Is contacting your clinic for this information an option for you?

dee081772 | @dee081772 | Oct 22, 2019

Hi I just found out I have this, I am on Methotrexate 2.5mg 4 pills a week. Its suppose to be curable. Although I am in denial, I left my clinic without any information. So if you can help that would be great!

sabrina2 | @sabrina2 | Oct 18, 2019

In reply to @taddyp "Hello, new to these posts, groups and all of this information. I have had atopic dermatitis..." + (show)

@taddyp

Hello, new to these posts, groups and all of this information. I have had atopic dermatitis for 60 years and it has now evolved into something else that I am really suffering with. I have been to several dermatologists at the big hospitals around the Philadelphia area and they cannot diagnose my new condition however they have recently thrown out some new terms such as Cutaneous T cell lymphoma (CTCL). It has been a nightmare trying to get a true diagnosis as everyone knows, this is very hard to do. The doctors put labels on like Atypical Dermatitis or something that does not give you the answer or treatment you need.
This past winter my condition turned and went from my traditional atopic dermatitis (Eczema) to this new unknown condition that I don't have a name for but it has disabled me at time. When it was really bad, 90 percent of my body was covered in what they call Erythroderma (redness of the skin) but also was covered in lumps/hive like things over my back. I had uncontrollable shakes, night sweats, and severe sensitivity to anything touching my skin. I felt like I was having seizures at night it was so bad and my skin was burning, not itching like eczema gives you. The doctors gave me overdose amounts of prednisone (60/80)mg per day for over 3 months. It tore my system apart on the inside but did nothing, nothing for my bizarre skin condition.
I stopped taking and eating everything, it took weeks to taper off the prednisone but and so glad I am off of it. When I totally went on the lamb and ate a very bland diet, no coffee or anything, the lumps\hives went away after 4 - 6 weeks but cannot get rid of the Erythroderma, burning skin or skin sensitivity. I have been through it all my life with allergies, eczema, itching but am at wits end. Now I have a pre-cancerous patch on my arm about the size of a quarter that had been biopsied and told that it needs to be treated. my current doctor wants me to use a type of topical cream that will totally inflame the area and kill the cancer. That's all I need is to have my are totally inflamed for 6 - weeks. I'm tired of suffering and am glad to vent my frustrations.

Jump to this post

Do you have cold urticaria ??