Anyone have Cutaneous T Cell Lymphoma?

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?

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?

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.

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....

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!

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.

Hi. I am not sure what your doctors have told you. I am stage 1A and currently doing phototherapy. I believe this is a chronic condition that will according to oncologist require constant monitoring and treatment but will not “kill me”. My dermatologist is more optimistic and says phototherapy will be the only treatment needed and it is chronic. In other words wait and see.

@colleenyoung Thank you so much

Hi @bilpal6, welcome.
I moved your post about being diagnosed with stage IIB CTCL to this existing discussion so you can connect with members like @cindy16 @shari715 @beeclee @kbirt @sherriesdalinas @cmahan10 and others who have CTCL and are undergoing similar treatments:
- Anyone have Cutaneous T Cell Lymphoma? https://connect.mayoclinic.org/discussion/cutaneous-t-cell-lymphoma/

How are you doing on Pegasys?

I was diagnosed with CTCL in November of 2022. I have been told I am in stage IIB. I have been prescribed methotrexate, steroid creams and phototherapy 3X a week. In January of 2024, I am now receiving a weekly shot of pegasys. I’m trying to get an understanding of what my life expectancy is and to understand how this disease may or may not progress. My understanding is that this is a chronic disease and treatment will be life long. Can anyone provide any guidance?