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

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?

@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.

Hi, @mjgboulder, I am reposting my comment here, as I mistakenly replied to the moderator and not you, and I want to make sure you see this! 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 thus far with you in hopes that it helps, and we too are continuing to learn from hearing other people’s experiences. Blessings to you.

Hi @truenorth71 Welcome to Connect. Sometimes finding people with a similar rare diagnosis is truly like finding a needle in a haystack! So thank you for joining the discussion regarding Extranodal NK/ T-Cell lymphoma, nasal presenting. I’m sure @mjgboulder will be encouraged by your reply and happy to talk with someone else who knows and understands what he’s going through!

Since Connect is an open forum where members are here to learn, share information and support each other, it’s encouraged to keep the conversations flowing right here in these discussions. ☺️
What is the treatment your husband is receiving for his lymphoma?

@truenorth71
Lori - Thank you so much for your note. I would love to connect and share experiences. I'm early in the treatment. I had my first chemo session Sept 24 (just the Pegaspargase) and having my second chemo this Thursday (Oct 15) with all 3 of the drugs they are using PGEMOX.: Pegapargase, Gemcitabine and Oxaliplatint. The first treatment has been quite easy to tolerate - not sure how this next infusion will go. Could we find a time to talk? I'm in Boulder, Colorado so on Mtn Time.
I will get on the Facebook group. Thanks so much for that connection.

Looking forward to conneting,
Margery