Cancer Survivors Network - Esthesioneuroblastoma - Comments

WOW

JayWade65 — Sun, 29 Jan 2012 08:30:17 -0500

You sound exactly like me 23 years ago. In 1988, I had a severe sinus infection (which I always battled with) and after seeing a Otolarnyncologist, he gave me antibiotics, decongestants and a shot of celestone (steriod) and I felt great for 2 days. Then it cam back with a vengence. Eventually I was passed around until they did a nasal scope and found that almost my entire left sinus cavity even beginning to grow down into back of the throat had the massive tumor. 3 biopsies later and they called it a small cell carcinoma becuase back then the record was 200 esthesioneuroblastomas. They did a radical maxillectomy and gutted the left side of my face which is now a big cavity. Half my palate all of my sinus and my left eye were taken out and the skinned all the tissue out and took skin from my leg to put back in the cavity. I have a prosthetic partial in my mouth that covers the missing section of the palate and I wear an eye patch to cover the left eye socket. An amazing job done back then by the Assistant Director of Otolarnyncology at the U. of Texas Health Science Center. All I had to do was a lot of radiation for treatment. No Chemo and I have had it 2 more times (head and lung) and never had to do the Chemo (thank God). Today I am going for my follow-up MRI (head) and CT (Neck/Chest/Pelvis). I will pray that your smell and taste remain intact.

Jay

Dry Mouth

JayWade65 — Fri, 27 Jan 2012 07:39:02 -0500

There is supposed to be a medicine you can take for the dry mouth. They didn't have it back in 1988 when I had my first bout with ENB. It is recommended because the dry mouth can have detrimental effects on your teeth. I can attest to that as all my teeth are crowns now.

DEALING WITH THE BIG C -

namaste — Wed, 14 Dec 2011 19:48:02 -0500

DEALING WITH THE BIG C - COMPASSION...wow...I could not put it down. Husband had esthioneuroblastomaectomy in 2006...stroke post surgery, unconcious for 1 month, 2 year IV antibiotic for MRSA at surgical site,2 additional frontal craniotomies searching for infection, radiation,seizures, rehab to walk/talk/feed self........currently dealing with macular degeneration in eye(blind in R eye) that was most radiated and myeloid maturation arrest probably from radiation......he is one of the funniest guys I know,says he was blessed to have cancer, he runs on treadmill, thinks each day is wonderful. I now can appreciate how blessed he was to be unconcious.....as he explains to inquiries, "I don't know I missed it all" Thank John and Colleen

DEALING WITH THE BIG C -

namaste — Wed, 14 Dec 2011 19:47:40 -0500

DEALING WITH THE BIG C -

namaste — Wed, 14 Dec 2011 19:47:28 -0500

esthesioneuroblastoma

cbreyer — Wed, 14 Dec 2011 17:41:04 -0500

alarson,

16 years ago my brother was diagnosed with estesioneuroblastoma - he was 19 yr old at the time. I still occasionally read information on this type of cancer because of how rare it is. He also was diagnosed in Fargo, ND - so I found your post interesting. He was also referred to Mayo in Rochestor and had surgery there - but did his treatments in Fargo at RMCC. Just curious about how your Dad is doing and where in Fargo did he have treatment.

how

veronica12 — Thu, 08 Dec 2011 10:09:00 -0500

how is she now if you do not mind me asking

bella

veronica12 — Thu, 08 Dec 2011 10:07:55 -0500

how are you doing my husbend was told he had this april of last year he done all his trement he apt with hid surgrn he says he see nothing in there with the scope it looks clear he apt this monday to see the radashion doctor they did get all his tumer out.
i feel sick and worried can we talk , you see like a angel. from what i i read

bella

veronica12 — Thu, 08 Dec 2011 10:07:42 -0500

Treatment

SIRENAF42 — Thu, 01 Dec 2011 12:54:26 -0500

Has your Esthesio spread to the bone? Is this why they are wanting Chemo. I had Estheso and underwent two endoscopic sinus surgeries to remove the tumor from the Ethmoid sinus, right maxilary sinus and nasopharnyx and then several months later - 6 weeks IMRT radiation. I am now 3 years cancer free.

I lose my sense of smell on days when I have allergies or any stuffiness, and my taste is better, but I just dont like the things I used to. Other than that, all I deal with is the side effects from radiation (dry mouth, thyroid issues, brain fog, forgetfullness, chronic dry eye, just to name a few) but better than the alternative :)

Re: Under Treatment

JPelar — Sun, 27 Nov 2011 18:11:22 -0500

Mr. Bill, I'm wondering why you are going through chemo in advance of surgery... I had no chemo at all. In fact, I'm told that there is no clear cut chemo plan for Esther (what I call my esthesio tumor). For me, they just took it all out (tennis ball size) through my nose, and then I had 6 weeks of radiation three months later. Yours sounds very similar to mine. You should seriously read my book (Dealing with the Big C: Compassion). Save for you having chemo, your situation sounds remarkably similar to mine. Maybe the book will help you to see what's coming, and you'll be better prepared. Plus it's funny; I use humor to get through all stressful situations in my life, including Esther. Meanwhile, my sense of taste is actually fine now; back to what it was before surgery. I'm convinced my tumor was growing slowly for a very long time, and my sense of smell was pretty lousy as a result, and my sense of taste adjusted a long time ago. So, losing smell completely as a result of the surgery wasn't really much of a drop off.

Good luck.

Jack Pelar

KS

KS — Fri, 18 Nov 2011 22:38:08 -0500

Web site acting up and repeating everything. Sorry

KS

KS — Fri, 18 Nov 2011 22:33:21 -0500

No, they were able to remove the cancer.They did remove the ofactory gland. Dr. Snyderman and Dr. Gardner. Snyderman was the surgen. They told me that they had to be agressive with the radiation. I had a break at Thanksgiving and Christmas for about 4 days each time.

KS

KS — Fri, 18 Nov 2011 22:32:18 -0500

To robe 68

kian — Thu, 17 Nov 2011 08:26:06 -0500

My son also recently had a 2nd recurrence to 2 lymph nodes in the chest. He was treated with surgery and radiation for the first 2 tumours. The present tumours are also small but his doctors in London decided on chemoradiation. He just had his first cycle of etoposide and cisplatin. Next appointment is 28 Nov

We are praying ever harder that God will give him an outright cure this time around. All the best to you too. Will be pleased to hear about your doctor's next course of action.

Esthesioneuroblastoma

lborntrager — Mon, 17 Sep 2007 17:20:15 -0400

Anybody out there know of or have information on survivors of olfactory (esthesioneuroblastoma). I am a 2 year survivor and would like to communicate with anybody that has info. Thanks!