Any Sezary Syndrome People out there?

Posted by martinsmckinney @martinsmckinney, Aug 5 7:17am

Hello there,

I was diagnosed four years ago with CTCL. Two years ago blood numbers increased to Sezary. Just curious if others are actively on this site and how they are doing. (My numbers are down and skin is clear...for now).

My best to you,

Martin

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Lori, Volunteer Mentor | @loribmt | Aug 5 9:43am

Hi Martin, Sounds like you’re having success with the treatment you’re involved with for Sezary Syndrome. That’s fantastic…and certainly an encouragement for anyone else dealing with this condition.

@norseman44, is another member who has been diagnosed a while ago. You both chatted a bit back in this discussion:
https://connect.mayoclinic.org/discussion/anyone-using-mogamulizumab-in-the-treatment-of-sezary-syndrome/
Hopefully you two will reconnect and share updates. You never know who will read through these discussions and find hope in your words!
What treatment did you feel worked the best for you?

martinsmckinney | @martinsmckinney | Aug 7 6:59am

Hey there Lori,

Thank you for your direction and help.

POTELIGEO® (mogamulizumab-kpkc) is what quickly lowered my blood involvement however, my skin flared up for several months. My skin is clear now after seven months of regular IVIG and Ozone infusions. What a change since the beginning of the year! 🙂

My best to you,

Martin

Please sign in or register to post a reply.