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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
@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.
Replies to "@loribmt Hello, and thank you for posting. My husband was also diagnosed with ENKTCL, nasal type,..."
@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
Connect
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?