Anyone using Mogamulizumab in the treatment of Sezary Syndrome?

Posted by norseman44 @norseman44, Sep 24, 2023

After trials on Methotrexate, Chlorambucil & Brentuximab my oncologist is suggesting Mogamulizumab infusions.
Being asked to make a decision on starting, I’m reaching out to other patients asking them to share their experiences, good or bad.
Thank you

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norseman44 | @norseman44 | Sep 28, 2023

Surprised that no one has responded to my inquiry. Know from other social media sites that there are quite a number of patients on Moga.

Lori, Volunteer Mentor | @loribmt | Sep 28, 2023

In reply to @norseman44 "Surprised that no one has responded to my inquiry. Know from other social media sites that..." + (show)

Hi @norseman44 I’m surprised too. After doing several searches in our forum there were no references to Poteligeo/Mogamulizumab infusions though it’s a relatively new drug, approved by the FDA, August 2018.

Now that your question has been posed with the mention of Sezary Syndrome there may be more members joining into the conversation.

Is there a reason your doctor is making the switch in meds?

norseman44 | @norseman44 | Sep 29, 2023

Lori, oncology has made application for the Mogamulizumab as the Metho & Brentuximab are not effective in clearing my situation.
May not get government approval from the Ontario health plan but hopeful.

martinsmckinney | @martinsmckinney | Feb 18 4:29pm

Hey there,

I started MOGA November 2023 and stopped due to increased rashes. Almost immediately my blood count went from over 1,100 to less than 100. I started IVIG December 2024 and with one dose, feeling great. My skin is clear now.

Let me know if you have any questions.
Martin

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