Anyone else with Extranodal NK/ T-Cell lymphoma, nasal presenting?

Posted by mjgboulder @mjgboulder, Sep 16 1:03pm

This is an extremely rare lymphoma for a Caucasian woman like myself. Typically found in Asian men.would like to talk with anyone else with this diagnosis about treatment. I'm Stage 1, localized in my nose. Standard treatment is chemo/radiation/chemo.Seeking consult at memorial sloan kettering to see if any option including some immunotherapy to limit toxicity. Please contact me if you or someone you are close to also has this diagnosis

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Lori, Volunteer Mentor | @loribmt | Sep 20 1:04pm

Hi @mjgboulder While you’re waiting for other members with Extranodal NK/ T-Cell lymphoma to reply, I just wanted to welcome you to Mayo Clinic Connect.
This diagnosis is a bit of a rare bird and unfamiliar to me. So I had to do a little searching. The standard treatment is as you mentioned… intensity-modulated radiotherapy (IMRT) combined with optimal chemotherapy. From everything I’m reading, if caught early the treatment has encouraging results.

But I can understand your wanting to minimize any side effects. Hopefully your consult at MSK will be able to offer some options. But please don’t let potential side effects of meds deter you from the importance of treating this early. I’ve gone through my own aggressive cancer journey. The chemo cycles were rough but they worked. Our bodies are meant to heal but sometimes they need some help, and we recover. ☺️

Since this is such a rare diagnosis, what were your symptoms? How was it finally diagnosed?

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