Anyone have Cutaneous T Cell Lymphoma?

I was diagnosed late last year. I am stage 1B. I have used the Triamcinolone cream and have just started the phototherapy. I have been told, basically, what you have stated.

My sister had radiation therapy. Well now.
I hear a lot about phototherapy. Exactly what is icy?

Thanks
To all
Fight to be strong.,
Your life is worth living!

It has been a few months since I have been on the group. Tyler my 33 yr old son has CTCL/MF.
We are still having a hard time understanding this. I feel there isn't enough information out there or we are just not understanding this condition. Tomorrow Tyler goes back to NYC to Sloan for his 3 month follow up with the dermatologist and oncologist. He has been using Triamcinolone Cream since he was diagnosed in July and receiving photo therapy since the end of December.
I need to thank you @shari715. You answered a lot of questions for me. If I was not a part of this support group I do not know where we would be regarding Tyler's treatment and my piece of mind. I have absorbed so much information reading this thread. I record the appointment so if we missed something or may have questions later, listen, ask questions and make suggestions when we go to Sloan.
It is nice to have a group to go to for support and give support.
Tomorrow we will see what is next....

Thanks for your kind words. The best, if somewhat overwhelming information, is on the CTCL. I am sure the MD at Sloan will be very helpful. When I was 32 (in the dark ages) I was diagnosed with Non-Hodgkin lymphoma and was successfully treated. I wish I had access to people at Sloan or even Mayo so I could ask the doctors if there is a connection. My current amazing doctors do not know the answer. Keep in touch.

I saw on this site Drs. do not think T-Cell is contagious
Even though it is not contagious, could you inherit certain genes that make you prone to blood cancers? My mother had multiple myeloma. Her sister, my aunt, had leukemia. I have been diagnosed with cutaneous T-Cell lymphoma. Where could I find more info on this?

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?

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

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.

@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. 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.