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Any experience with treatment for Esthesioneuroblastoma?
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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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.
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1 ReactionHi @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?
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1 ReactionBonjour
J'ai eu un ésthésioneuroblastome (ou neuroblastome olfactif) en 2019.il a été soigné et tout allait bien. Mais depuis 2023 j'ai de petites tumeurs dans les méninges et il s'agit du même cancer. J'ai aussi 2 tumeurs dans la moelle épinière.
Est ce que quelqu'un souffre d'un esthésioneuroblastome? Et quels ont été les traitements ? Êtes-vous guéri?
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2 ReactionsBienvenue, @nathdarzac. I moved your question about treatment and living with esthesioneuroblastoma to this exsiting discussion:
- Any experience with treatment for Esthesioneuroblastoma?https://connect.mayoclinic.org/discussion/any-experience-with-treatment-for-esthesioneuroblastoma/
I did this to help you connect with others like @lbushek6881 @k1e2n3n4e5t6h7 and @jessskoldal.
Nathdarzac, what treatment is being recommended for you now?
Merci colleenyoug d'avoir déplacé mon message. Concernant mes traitements, j'ai fait de la chimio en 2023 qui n'a pas eu d'effet et de la stereotaxie ( radiothérapie très précise) qui a permis de stopper l'évolution des nodules. On me propose de faire à nouveau une chimio mais je ne sais pas laquelle encore. Un cancer sur les méninges n'est pas opérable. De plus c'est un cancer extrêmement rare, je cherche donc des personnes qui ont été soignées pour un esthésioneuroblastome.
Je voudrais savoir quels traitements ils ont eu et si ça a marché.
Merci d'avance pour vos réponses.
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1 ReactionHello @nathdarzac, my husband recently went through treatment for Esthesioneuroblastoma in 2024. He had a large tumor in his sinus and it had already travelled to his right lymph nodes when he was diagnosed. He went to NYU Perlmutter Cancer Center where their team handles ~10-12 cases of Esthesioneuroblastoma a year. They were able to perform an endoscopic surgery through his nose and also had his lymphs removed at the same time. A month later he went into 35 rounds of radiation combined with 6/7 rounds of chemo 1/wk (Cisplatin). This treatment pushed him to his limits. The 7th chemo round was too much for his body so we stopped at 6, but so far, we are happy with his results. We are currently monitoring one lymph node on his left side, but it is considered non-cancerous and has remained stable 1yr after treatment. There are definitely changes and difficult challenges to his lifestyle since treatment, but overall, he is doing well for recovery.
From what I have read, reoccurrence is typically around 5yrs after treatment, if it does come back. I am sorry you have run into this issue, I often worry about re-occurrence. Will be thinking of you and I hope you can find the best treatment for this round.
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1 ReactionBonjour lbushek6881 et merci pour votre gentil message.
J'espère que votre mari va se remettre de tous ces traitements. J'ai eu aussi une opération, puis de la radiothérapie et de la chimiothérapie et j'ai mis un an pour me remettre de tout ça. Il faut être patient mais je suis certaine que votre mari va retrouver la forme.
Vous m'avez donné une bonne information en me disant que l'équipe du NYU Perlmutter Cancer Center traite 10 à 12 cas par an. Je suis en France et ici il y a très très peu de cas d'esthésioneuroblastome. Donc je recherche dans le monde des équipes qui peuvent avoir déjà soigné ce cancer. Donc merci beaucoup pour cette information.
Prenez bien soin de vous et de votre mari.
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1 Reaction@nathdarzac ,
I should mention, for the Cisplatin, most places will give 3 doses - 1 dose every 2 weeks. NYU choose to do 6/7 doses - 1 dose every week to lessen the long-term effects like peripheral neuropathy, hearing loss and ringing, etc. which we do believe helped, when compared to others with the 3 doses. Everyone is different though.
MD Anderson Cancer Center in Texas, I believe also deals with a "higher" number of cases, like NYU. Many places in the US you can call and send your scans/results to them for a consultation.