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Anyone else with Extranodal NK/ T-Cell lymphoma, nasal presenting?
Blood Cancers & Disorders | Last Active: Oct 13 6:00pm | Replies (5)Comment receiving replies
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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@loribmt Hello, and thank you for posting. My husband was also diagnosed with ENKTCL, nasal type, this year. He is Caucasian as well and we, too, were in shock and had a lot of learning to do about this disease. His treatment is well underway and we would love to connect with you if you are interested. I’m not sure the best way to exchange contact information, but there is a small Facebook group called “ Extranodal NK T-Cell Lymphoma
AKA ENKTL - A Rare Aggressive
Cancer” with about 33 members, of which we are one, so maybe we could find you there? We are happy to share our experience this far with you in hopes that it helps, and we too are continuing to learn from hearing other people’s experiences. Blessings to you.