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Anyone have Cutaneous T Cell Lymphoma?
Blood Cancers & Disorders | Last Active: 2 days ago | Replies (171)Comment receiving replies
I have just been diagnosed with a T cell lymphoma of my skin. Crazy. Interestingly I have a remote history of non-Hodgkins 1988. Went through all the treatment - surgery, chemo, radiation. I wonder if the two are related. I was basically declared cured in 2000. So I have not needed to see an oncologist for over 20 years. I know my Lymphoma was small B cell type but this was in the day with minimal genetic/cell typing. If you are counting I have been cancer free for 35 years. Excellent but now what. Any information will be helpful
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Hello @ shari715, welcome to Mayo Connect. This is a great forum to meet other people who share the same diagnosis. It can help to feel that you’re not alone. There are a couple of members who also have Cutaneous T-Cell Lymphoma.
@cindylb started a discussion in 2017:
https://connect.mayoclinic.org/discussion/cutaneous-t-cell-lymphoma/Anyone Have Cutaneous T-Cell Lymphoma?
That link will take you to the discussion where you can follow along with other members and their comments. It does start with the oldest from 2017. You can reverse the order by looking under the opening statement to see a box that says, Oldest to Newest. Simply click on there to switch.
I wrote this reply to another member a few weeks ago who was recently diagnosed with CTCL, @madisong. It’s further along in the same discussion and contains several reference links.
https://connect.mayoclinic.org/comment/807495/
Hopefully you’ll find some encouragement and good information with the conversations. Don’t hesitate to tag any of the members by replying in their comment or using their @name.
Have you consulted with a hematologist/oncologist yet?