Anyone have Cutaneous T Cell Lymphoma?

Hi @mrb2491 While you’re waiting for a reply from @cindylb I just wanted to welcome you to Connect. I’m so sorry you’re having such a miserable experience with CTCL (cutaneous T-cell lymphoma). I don’t know much about the condition but can sure empathize with the intense itching. I had similar years ago due to another type of hematological issue and it was just awful. The itching was worse than pain, I’m so sorry you’re having to deal with that!
Does anything help relieve the itching such as antihistamines or baking soda bath?
You mentioned dermatologists at Mayo. Have you been seen at one of the campuses?

@loribmt Hi Lori, thank you for your message. I am sorry to hear about your hematology issues as well. Itching is agonizing, and I sympathize with you. I’ve honestly tried everything under the sun. I do get temporary relief from things, but it is short lived. I have been seeing dermatologists at Mayo Clinic Rochester throughout my condition. Thank you again for your kind words, and I wish you well with your condition as well.

@mrb2491 Oh gosh, that itching is so horrible and truly, I’m sorry you’re not finding much relief. My ‘scratchy’ issues are in the past and not due to CTCL. I had AML, an aggressive for of leukemia for which I had a bone marrow transplant (stem cell transplant using a donor). The itching was associated with the leukemia and not uncommon.
From what I’m reading, in certain cases a stem cell transplant can be helpful for patients with CTCL. Though it doesn’t come without its own risks but possibly worth inquiring?
https://www.mayoclinic.org/diseases-conditions/cutaneous-t-cell-lymphoma/symptoms-causes/syc-20351056
I’ve also heard of people trying acupuncture for itching with good results. Others have had success with Pepcid which is more commonly used for heartburn-type issues. I’m not at my computer so I don’t have access to easy searching right now. Another idea that may be helpful is to type in various key words in the search bar at the top of this web page. Itching relief, chronic itching, etc.

Have you tried acupunture?

@loribmt I’m happy to hear you had a good result with your bone marrow transplant.

Thank you for your suggestions for the itch. I hadn’t heard about Pepcid. I have tried acupuncture without much relief. I’m willing to try anything if it brings relief. I will do some google searching and see what I come up with.

Have a great day, Lori!

Alguien que tenga o haya tenido problemas en la piel por linfoma tipo T?
Acabo de ser diagnosticado y estoy muy preocupado y ansioso ya que no se que pasará después🥺 aun no recibo tratamiento estoy en espera de hacerlo.
Le agradecería a quien pueda compartir su experiencia por favor 🙏🏻

Welcome, @valentin81. I moved your question to this existing discussion about cutaneous T-cell lymphoma:
- Anyone have Cutaneous T Cell Lymphoma?https://connect.mayoclinic.org/discussion/cutaneous-t-cell-lymphoma/

I did this so you can connect more easily with others like @mrb2491 @lancasterva @cessnaman @norseman44 @shari715 and others.

Valentin, it is normal to feel worried and anxious. This is all so new for you. What type of skin issues are you experiencing? When will you begin treatment?

Hi. Well I am really sorry you are waiting for a diagnosis. I am “pleased” to have another person to discuss multiple cancer diagnosis. I had non-Hodgkins Lymphoma in 1988. CTCL in 2023. Breast cancer in 2026. I am special - 3 separate cancers and every doctor denies they are related. Having breast cancer is complicated by the treatment I had for my other cancer. I had radiation and tons of chemo with no accurate information on what treatments I had since records don’t exist from 1988. So my only option is a double mastectomy. I am not sure if you are waiting for appointments, waiting for tests, and therefore a long wait for surgery and treatment. I know people on this site don’t like it if we complain about the medical system but it is pretty terrible at the moment. I felt a lump in January after a clear mammogram in November 2025 so this is an aggressive cancer. I will only have surgery in April. I wanted emergency surgery but I am waiting. I even had to find my own oncologist and persuade her MA that I deserved an appointment. How many people have 3 cancers in a lifetime. Why could I not go to the front of the line.
When I was in South Africa recently I saw oncologist and a dermatologist and after them reviewing my medical records plus a thorough examination said I did not need to continue with the light treatment. Needless to say treatment of CTCL was expensive. What I am trying to say get another opinion on how to treat your CTCL.
For the breast cancer getting an appointment was difficult and a second opinion would take months. So I am going with my instincts, after looking at all my options and having a double mastectomy. Get really good biopsies, multiple specimens make a big difference. Then you need MRI of breasts - not fun, MRI of abdominal and pelvis. Then the wonderful PET scan. Maybe you will be lucky enough that either your oncologist or PCP will discuss the results. Good luck.
Stay in touch maybe we can help each other.

Not sure if I'm putting this in the right place. I was officially diagnosed with CTCL in 2020 upon switching dermatologists. The second dermatologist took one look at my leg and said he was pretty sure it was not eczema which my previous physician had been treating me for. The biopsy came back and there was my diagnosis. I wish I could help you with remedies on itching. I have only had small bouts of itching and the redness has pretty much been contained to one leg and below my knee. I just recently started getting small tumors which they will be scheduling 3 weeks of radiation for. I hope someone can give you a good remedy for your itching. Wishing you the absolute best.

Hi @penelopem. Welcome to Mayo Connect. You’re absolutely posting in the right discussion to share your experince having Cutaneous T Cell Lymphoma. Kudos to you pushing for answers by switching to another dermatologist in order to get the correct diagnosis! It’s important to advocate for your health when you’re suspecting something isn’t right.

Are the small tumors located near the same area where your original symptoms occurred? Wishing you a positive outcome with the radiation treatments. When will you start the treatment?

@loribmt
Hi Lori, thank you for the email. The tumors are not where the redness/rash originally started. However, they are where new areas had popped up on the inner area of my arch and ankle the past year. Some of the area looks very normal and haa healed, and the other area has the tumors. I'm waiting for a call from the radiation center to let me know when my radiation treatment will start.