Any experience with treatment for Esthesioneuroblastoma?

Posted by lbushek6881 @lbushek6881, Apr 28 5:56pm

Hi, my husband was recently diagnosed with an esthesioneuroblastoma tumor in his sinus area, to discover it has also traveled to his right lymph node and possibly his left. He has had successful endoscopic surgery and is about to begin chemoradiation treatment for the next few months. It's been very difficult to find anyone who has gone through this process with this diagnosis recently, so I'm hoping there may be someone on here that I can chat with on their experience of side effects and how we can maybe prep for his chemo and radiation. Any insight is appreciated as this has been a difficult time for us.

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William Olsen, Volunteer Mentor | @hrhwilliam | Apr 29 4:27pm

Hello @lbushek6881 and welcome to the Head and Neck group. There have been some past discussions on Esthesioneuroblastoma on Feb 09, 2023, April 08, 2023, May & Jan 2022 and you can find these by entering esthesioneuroblastoma into the search bar at the top of the page. @jessskoldal is the resident expert on dealing with this rare form of blastoma, similar to Ameloblastoma but in the sinus as I understand it. I guess if your going to get something it might as well be something no one can pronounce. Anyway, you got the discussion started so lets see what happens.

Colleen Young, Connect Director | @colleenyoung | May 5 8:20pm

Hi @lbushek6881, I'd like to add my welcome. Both @k1e2n3n4e5t6h7 and @jessskoldal have experience with esthesioneuroblastoma and can share more with you.

I can imagine that this is a difficult time for both you and your husband. It's a lot to take in, especially when dealing with a rare condition. Has he started chemoradiation yet? What type of chemo will he be getting? How often will the radiation treatments be and how many?