Anyone have Cutaneous T Cell Lymphoma?

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 @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?