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Anyone have Cutaneous T Cell Lymphoma?

Blood Cancers & Disorders | Last Active: Jul 9 8:01pm | Replies (175)
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@bilpal6

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?

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Replies to "I was diagnosed with CTCL in November of 2022. I have been told I am in..."
Colleen Young, Connect Director | @colleenyoung | Mar 10 8:22pm

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?

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shari715 | @shari715 | Mar 11 10:27am

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.

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