Anyone have Cutaneous T Cell Lymphoma?

I was diagnosed about 18 months ago. It is very helpful to have a UV light box in my home. I use it three times a week and do not require any creams or medication. Creams and chemotherapy may be necessary but right now I am stable. Seems like you have a good team and a great treatment plan.

I am a 58yr old male that was diagnosed wit CTCL last June. This after many years of treatment of this area and others as I have mild eczema rashes on elbows, arms etc. The CTCL area is on the back of my upper legs (no sun) and would not respond to creams the same as other eczema rashes. Basically the area stayed red-ish/pink and bumpy regardless of treatment. So after many different eczema treatments the area was biopsied and diagnosis confirmed with blood test. I was told I will always have this condition but it should not affect my life generally, no decrease in life span generally. I do wonder if it could later complicate and combine with other cancers if I develop something.

Happily my current treatment is two different steroid ointments (ointments have always worked better for me on eczema than creams), each for two weeks alternating. Also to supplement with 20 minutes of sun a few times a week in the summer (live in NE). The area has improved significantly over the past 10 months by sticking to this treatment program - it is fainter now and hard sometimes to identify where to apply ointments. It never really itched or spread so that isn't wasn't a problem. I'm hopeful that some upcoming sun exposure might further reduce the rash as that helps my eczema each year, dry heat in winter bad, warmer weather colder showers and some sun helps.

I think the rash worsened when I was in my 20's and didn't treat the eczema for many years while in school or existing without real health insurance.

My sister has a benign form of CTCL called Lymphomatoid Papulosis. It’s rare ( one in a million) and can develop into CTCL or systemic lymphoma.
National Organization of Rare Diseases ( NORD) and the NIH have information on this and other CTCL. I’m curious why you’re considered at risk for CTCL

I have the other type of CTCL and have not needed medication. You are on some serious stuff. I am hoping to avoid all drugs because I have already had a huge amount of chemo for non-Hodgkin lymphoma a long time ago. I find the best information (after doctors) on the CTCL website. It is not an uplifting site but I was impressed with the information. Good luck.

Just over a year ago I was diagnosed with Sezary Syndrome which is a rare form of T Cell Lymphoma.
First line of treatment was Methotrexate & ECP. When slow to respond I moved on to Chlorambucil then to Brentuximab.

Currently on Mogamulizumab with ECP but unfortunately I have developed a rash & have become diabetic so expecting to discontinue.
Anyone else have similar experience? And what was next step?

Thank you for this information. My condition (Mycosis Fungoides) is responding very well with the light therapy. I am hopeful it will be in full remission by the end. I was diagnosed Ib so it was caught early.

@beeclee, here's more information from Mayo Clinic about genetic counseling. https://www.mayoclinic.org/departments-centers/clinical-genomics/services

Excerpt: "A genetic counselor has advanced training in medical genetics and counseling. Genetic counselors help and support people as they navigate and seek information about inherited conditions that could potentially affect them or their families. Genetic counselors often meet with patients and their families before and after genetic testing. Genetic counselors work in different areas of health care (for example, prenatal, cancer, pediatrics and more) and are important members of many health care teams.

To best support patients and their families and provide accurate information about genetic risks, a genetic counselor will often ask questions about personal medical history and family health history.

A genetic counselor may discuss:
- Your chance of inheriting certain genes or conditions based on your personal medical history, family health history or both
- Your chance of passing on a genetic condition to your children
- How a certain genetic condition could impact your health or the health of family members
- Options for genetic testing, if available
- The benefits, risks and limitations of genetic testing for you, your family members or future children
- Ways to talk about and share information about a genetic condition with family members"

Thank you for this information. I have never spoken to anyone. I did not even know there was such a thing as a genetic counselor. I just found it meaningful that there was so many blood cancers in our family.

No I have not spoken to genetics counselor. I wonder how many people have had Non-Hodgkin Small B cell and then 35 years later I am diagnosed with CTCL. I should be in a study. Thanks for the articles

You're right. Cutaneous T-Cell lymphoma or blood cancers in general are not contagious. Up to 10 percent of all cancer cases are traced to gene mutations and inherited cancer syndromes passed down through generations. Researchers are studying the genetic predisposition of some blood cancers.

Here are a couple of studies explaining more:
- Study Identifies Familial Risk Patterns of Several Hematologic Malignancies https://ashpublications.org/ashclinicalnews/news/4753/Study-Identifies-Familial-Risk-Patterns-of-Several
- Genetic and epigenetic insights into cutaneous T-cell lymphoma https://ashpublications.org/blood/article/139/1/15/477053/Genetic-and-epigenetic-insights-into-cutaneous-T
- Mayo Clinic study finds 1 in 8 patients with cancer harbor inherited genetic mutations https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-study-finds-1-in-8-patients-with-cancer-harbor-inherited-genetic-mutations/

For some cancer types, knowing if you have a genetic mutation can help determine the most effective treatment.

Have you ever spoken with a genetic counselor to learn more about genetics and cancer?