Anyone have Cutaneous T Cell Lymphoma?

@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!

@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 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.

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?

I am so sorry. This sounds terrible. I was very fortunate as I was diagnosed with 1A. I had one small lesion. I used light treatment for over 2 years successfully. I stopped in May 2025 when I went on an extended vacation. I saw a few doctors in South Africa and they felt the treatment was not necessary. For a variety of reasons have not restarted the light treatment. My skin is not great and it is extremely dry but I see my dermatologist frequently and I have had no further lesions.
I am really sorry but I don’t believe this is very helpful. Good luck.

Hi Cindylb, I was diagnosed with cutaneous T-cell lymphoma in 2017. I had a hysterectomy and woke up with extreme itching on my back. Over the next 18 months I developed an extremely itchy rash over most of my body. I saw more than a dozen doctors in dermatology and had many biopsies before they finally figured it out. The treatment has been quite frustrating, lots of steroid creams and UVB light therapy. I get a lot of skin infections from all of the itching. My skin itches and burns pretty much all of the time. My rash has progressed to plaques which are very itchy and painful. There are only a couple dermatologists that treat CTCL at Mayo. It’s very rare, and it doesn’t seem like there is much known about the disease or how to treat the symptoms. I’d love to connect with others that have CTCL to hear what they use for relief of the itching and pain. I’ve met one other person with CTCL, but she has just one isolated spot on her back. My entire body is affected aside from my face and hands.

Hi @mrducks. Welcome to Connect. Let’s get you over to the right support group where you’ll be able to connect with other members who also have Cutaneous T Cell Lymphoma

This would be a great place to start:
Anyone have Cutaneous T Cell Lymphoma?
https://connect.mayoclinic.org/discussion/cutaneous-t-cell-lymphoma/
You’ll meet @dodgegirl2, @58skywagon @shari715 and many others who share their experiences with CTCL including treatments and advice…along with encouragement. Hopefully they have some suggestions for your itching!
Has the treatment with Valchlor and Clobetasol helped with your CTCL?

I was diagnosed with cutaneous T-cell Lymphoma in November 2024 and now undergoing treatment with Valchlor and clobetasol. Just wanted to know if anyone else is using this drug and how are they dealing with the constant itching.

Norseman44,
Have you tried IVIG? I too have Sezary and it cleared my skin all over and I feel wonderful. Best I have been in 5 years.
Cheers,
Martin

dodgegirl2
First time for me to post on here. Like many of you, we have multiple problems. I have had a balance and gait disorder for 24 years with no
answers. I was handling it and could still drive even though people looked
at me strangely. It has been 10 years since I noticed real subtle weight
loss, and that feeling something isn’t right. Taking care of 2 acres of land
will help you loose weight. In 2015 I saw my Dermatologist for a rash..he
thought was hives. CTCL can be subtle. I had a rash on the top of my right
foot…the itching drove me crazy…once that stopped , the skin felt like light
sandpaper. The rash moved to inside right knee…to left knee…to the back
and covering the back, all within 2 weeks. Lots of punch biopsies done.
was sent to infectious disease doctor …He drew a lot of blood. In April
2017 saw the dermatologist and he saw something on my back he didn’t like
and did a punch biopsy.. Memorial weekend I found out I had CTCL.
My doctor is an oncologist and a hematologist. She does monthly labs,
and Ct’s every 6 months. Since I’m on the Mayo site I was in Rochester in
June of 2021. Even the doctors at the Mayo don’t have all the answers, but
in the course of my stay they did lab testing. I got home checked the portal
to see the records. Surprise…they found a fraction IgG Lambda M protein.
labs also showed higher Kappa. I printed everything off and sent it to my
doctor. She does an SPE and IFE test along with Kappa/Lambda every 3-4
months, My MGUS is stable….I take bexarotene for the Lymphoma . She
did tell me that the Lymphoma could be one reason Kappa is elevated.