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Joined: Sep 2007

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!

Posts: 11
Joined: Jul 2009

Sinus function: regulate temperature & amount of moisture in air breathed in. Loss of some sinuses is apt to set up an environment in posterior nose where mucous is too dry resulting in crusting. I would NEVER use soap or H2O2 on mucous membranes.....My post-esthesioneuroblastomectomy, 2006, husband's( most irratating) experiences with increased post nasal dryness is @ change of seasons( as membranes adjust to change), dry heat blown from car radiator, wood stove dryness..... Helpful at these times - car with heated seats- increased nasal irrigation,humidifier at night, increased saline nasal spray use and/or packing nares with xeroform dressing intermittently (keeps posterior nasal membranes at a more consistant moistness and temperature. I would say he has not found a cure but a "new normal' 6 years later.

Posts: 6
Joined: Jan 2009

had my surgery on 11/22/02 ( coming up on my 10 year anniversary)...doing fine but I've adjusted to the fact that I will be irrigating for the rest of my life.....if I am outdoors during the day...often need to irrigate 3 times a day...but a relatively small price to pay....so other than the loss od smell and less than perfect taste ( from the radiation)....things are allright

Posts: 11
Joined: Jun 2012

Actually, my docs at UVA told me to try these rinse treatments to see if crusting buildup could be slowed or stopped. The first was to mix 1/8 Tsp of baby shampoo in with 8 oz of saline and use that to rinse. The other one was to mix 2 oz of OTC peroxide with 6 oz of saline solution. I tried both over a period of several months and neither worked. The docs still have to remove the crusting every two month or so. I rinse twice a day. That, plus total loss of smell and taste, are the only side effects I have. I'm 63. Still go into work every day 

I had my ENB treatment in early 2009 and so far no recurrences.

Posts: 3
Joined: Mar 2007

Wow. I got on this site a month before my husbands surgery, just after diagnosis, in March of 2007. I don't know what I did, but I never found ANY of you people. I'm glad to know that there are other survivors out there - though I'm sad for the unexpected sufferings you've had, too. I'm just amazed to find others now, and didn't even remember being on this site before today. I do know that I hunted Everywhere I could, and could only find a few places on the internet back then that even mentioned the word esthesioneuroblastoma.

Anyway, my husband was diagnosed in February of 07 at age 45. He'd been going to the dr's around here for nearly 15 months due to a blocked nostril. He was finally sent to a sinus doc who prescribed a bunch of different things and then an ENT who ordered the first MRI and sent him straight down to Emory in Atlanta without telling us what he saw.

So we found out it was cancer when they ordered the PET scan and we asked what it was for. The reply? "To rule out Other malignancies"


My husband had a huge tumor, stage C or stage 4 or whatever the worst was - the only thing the dang thing had not done was metastasize at that point. It grew into the maxillary, sphenoid and ethmoid sinuses, through the cribiform plate and into his frontal lobe before it was found. My husband had no symptoms, worked until 2 days prior to surgery in April. Well, in retrospect, he had been having some headaches that he thought were due to "stress". And then he got some nose bleeds much later, just prior to diagnosis, that we thought were due to it being dry in the house over winter....

His surgery went very well in Atlanta, he did not want to go anywhere out of state and these people had just published some data on ENB in 2006, a 20 year study or something like that.

But 6 days after surgery, he had a stroke, the contracted pneumonia, MRSA, another staph infection, and ventriculitis. It was rough. He was in a coma for awhile, in hospital for 2 and 1/2 months (he thought he'd be home eating pizza after a week) and had to relearn to swallow, make a sound, walk, talk, etc.

But three months after surgery he was back playing the drums (though he was very weak).
He got negative margins around it all. Half of the surgery was done by the ENT, and half by the brain surgeon.

He relearned to walk and drive and then had radiation (something like 35 treatments) and it weakened him a lot and gave him a metallic taste in his mouth. (he did NOT lose his sense of taste, but the olfactory gland was GONE).

After radiation, he had chemo. Etoposide and Carboplatin. Two very nasty drugs. They took my weak husband and nearly did him in. Two treatments and the oncologist shook his head. No more, he said. It's making him too sick. My husband would get up to go to the bathroom or somewhere and just bam! fall on the floor. He's 6'4" and had been 275 prior to surgery, but came home weighing 215. He'd never smoked or anything, no one had cancer in his family, never was sick, worked so hard.....

But he's doing OK now. He went through a really rough time, but thankfully, he does not remember most of it. He's got some cognitive disability, plus aphasia, but is able to be a dad to our children (youngest is 12, she was 6 when her dad got sick), and is generally a happy, grateful man. His MRSA caused us to have more surgery, but we call it when his head was removed '08 (bone flap) and later was replaced in

He did have a reoccurrence in August of 2011 - three small spots sitting on top of his dura. They were radiated with our hospitals' equivalent of the gamma knife deal. Two are gone, and the one that remains shrank and is not growing. This happened 4 and 1/2 years after surgery.

Now there is a small enhancement next to this last tumor, but they don't know if it's new growth or necrosis. He also had some seizures for the first time this summer. A grand mal on Father's Day this year. Now we have some good drugs for that and he's doing great.

I'd love to talk with others who are on this same journey. However long or short. And I'm so grateful to hear that there are other long term survivors!!! We were told 5 years ago that there was no data on anyone past 10 years....

God bless you all. Peace and healing,

Posts: 2
Joined: Feb 2013




Posts: 1
Joined: Apr 2013

Hi all.. My 4 year old daughter was just diagnosed with estesioneuroblastoma, she had emergency surgery as the tumor was causing proptosis of her left eye.  She had a partial resection and had a grapefruit size tumor removed from her dura and left eye orbit.  A small piece was left to save her eye and in only 3 short weeks the small tumor had grown very aggressively.  She has received to rounds of chemo so far and is scheduled for 6 weeks of proton radiation to begin soon.  She is stage C from my u derstanding meaning it traveled outside of the sinus cavity but to their knowledge has not metastised elsewhere in her body, she is scheduled for a pet scan on Monday.  Has anyone been through this with a child? The doctor said there are so few cases they aren't even sure it is the same disease in a csold as it is in an adult.  Based on what I read here it looks like there are several cases of recurrence and I'm wondering if that has been true in childhood cases as well...


jedsnearlythere's picture
Posts: 9
Joined: Aug 2013

Hi Asmom905, I am so sorry your little one and your family is going through this. I cannot even begin to imagine how difficult it must be for all of you. I can' t offer any insight on this disease in childhood, I was just wondering how things were going? You are in my prayers x

Posts: 4
Joined: Dec 2003

I am surprised that there are still posts from 2007.  I was diagnosed in 2001 and heve been cancer free for 12 years.  I have always gone for the CAT scans of my head, neck and lungs but was released this year from that.  I am not comfortable with not checking, but I think that I will do it about every 2 or 3 years.  I do not know what the protocol is so I guess that I am just supposed to take my chances.  Any commemts are welcome.

Posts: 3
Joined: Jul 2012

I am only nine months out from surgery, however, my doctor doesn't recommend any routine scans.  They feel that a visual inspection is sufficient (I am still returning every 8-10 weeks for cleanins and followup).  I don't feel that great about the lack of scans.  I am curious to hear what others have experienced in the way of followup scans after the surgery.   I had everything done at UVA.

Posts: 11
Joined: Jun 2012

I also had all my treatments done at UVa.  The last was surgery in July 2009. Prior to that, I had several MRI's.  Since then none. I never really thought about it until now. I've always counted on (and trusted) the opinions of Dr. Levine. If he sees the need for follow up MRI's or scans, so be it. Typically, I have follow up examination and de-crusting work done every 2 months or so.

Posts: 2
Joined: Jun 2013

In March 2013 I had surgery to remove what we thought was a nasal polyp.  Biopsy came back as Esthesioneuroblastoma Grade 2.  My ENT in Maine had never heard of this and we were sent to Boston within a week to meet with ENT Eric Holbrook and neurosurgeon William Curry.  AMAZING docs!!  My turmor was contained to the left side, not very agressive, and had not reached the brain.  I had a 9+ hour surgery in May, spent 4 days in ICU and was discharged on the 5th day.  Recovery went really well.  I just finished radiation a little over a week ago.  I had 25 treatments to the lymph nodes.... the cancer had not spread there but treated as a precaution.  I also had 33 Proton treatments to the tumor site.  The radiation itself was not bad and I didn't have too many side effects.  The worst side effect I am dealing with now is the congestion due to swelling from the radiation.   Anyone else have or had this issue?

Posts: 1
Joined: Dec 2011

Congratulations on getting through your radiation treaments!  I hope you are feeling OK.  You've been through a difficult and long ordeal.   Take very good care of yourself.

Did you have endoscopic resection or open surgical approach? 

There are similiarities in our cases, though my cancer might have been more extensive.  My first surgery was also to remove what was thought to be a polyp.  My esthesio was Kadish B, Grade 2/3 and was in the left middle turbinate and maxillary sinus.  The cancer surgeons also removed my skull base, dura and both smelling nerves, but thankfully no cancer was found in those areas.  I had endoscopic surgery at UPMC but had my chemo and proton beam radiation at Mass General in Boston.  Like you, I also had my neck radiated as a precaution.   I finished chemo/radiation April 2012.

I also had a lot of nasal congestion after radiation.  It especially bothered my ability to sleep.  My surgeon said my sinuses/nasal passages would take a year to heal from the radiation related damage/inflammation.  I nasal irrigated at least 2, often 3 times a day and it helped the congestion.  Howeer, I also suffered from nasal obstruction due to a scar band in my nasal passage.  I was told scar bands are not uncommon in patients who have had endoscopic surgery.  In my case, it contributed to difficulty breathing, so I eventually had the scar lysed 3 months after finishing radiation.  That made a big difference in my case.    





Posts: 2
Joined: Jun 2013

 I had the endoscopic resection..... and yes lack of sleep is the biggest issue right now.  Apparently I have developed a cold on top of all this.  The Radiation Oncologist told me I should start to see some improvement with the congestion within a month.  I will see my ENT in two weeks, we will see what he has to say.....  Did your scar tissue develop right after surgery or after radiation?   Hope you are doing well and thanks for your input!


Posts: 5
Joined: Sep 2013

Hello Fellow Members,

My husband who is a 5 year survivor with a recurrence to his lymph nodes, will start his six weeks of radiation tomorrow. This times around I'm sure will be better for him as he is not doing the chemo this round. Apparently as this is a "orphan" cancer, not a lot of data on chemo for recurrences and so they base it on squamous cell carcinoma and chemo only gives you a 10% increase in 5 year survival. Tom did very well with his two recent surgeries and I'm sure he will do just great with the radiation. We are completing all the treatment this time at Hopkins alone but we did seek a second opinon at UVA with Levine. They all say the give the same basic pep talk on actual evidenced based research but we have had varied subjective opinions on chemo.Basic recommendation (based on squamous cell stuff) is that if you have extra capsular spread from lymph node or 3 or more lymph nodes that are positive then chemo is an option.

Tom had two positive lymph nodes but one of them had some "focal" extra capsular spread. We have Levine who said because of hearing loss (from previous chemo round) maybe low dose weekly cysplatin with six weeks of radiation. Then you have UVA radiation oncologist saying if it was him he would do radiation only. Then you have UVA medical oncologist who says you are young and healthy go full blast with full dose cysplatin only.

Then you have Hopkins...radiation oncologist lays out the information and states you have that option for chemo. Hopkins medical oncologist says if she was the patient she would not do chemo....Hubbie decided to save the big gun (chemo) for any future recurrences. So here we are ready.. set...go...

The theme song for Tom and I (if we could have that option) would be Avicii's Wake Me Up when it's all over when I'm wiser and older. Oh if we could all only do that right??


Tia Y's picture
Tia Y
Posts: 4
Joined: Jul 2012

So sorry to hear Karla about Toms recurrence. I always look for survivors and try to grab hope from their years.  unfortunately, it seems this nasty esthesio has a bad habit of coming back. Mine has been very aggressive and continues to give me new tumors & moves often making me have multiple surgeries,losing body parts, now going into my 3rd series of chemo&radiation treatments in the past 15months.  I wish you both strength to get thru the next round with flying colors and beat this demon. Good luck.

Posts: 5
Joined: Sep 2013

Hello Tia,

Cancer sucks! I think the scariest thing is not knowing what's going to happen. It would be easier to deal with if we could just think of this as a chronic health problem where Tom would have to go back every few years and have surgery/radiation or God forbid chemo. It's the "other door" that we all worry about...death. I think about my kids and having to possibly grow up without their Dad. Or not growing old with my husband as I always foresaw in the past. It's scary...

Fortunately, right at this moment i think we are in a good place. Tom finished radiation Thanksgiving week which was a rough week but without the chemo this time it was a much more palatable recovery this go around. We will keep our fingers cross and take each day as they come. 

Tia I hope all is well..Keep fighting the "demon". Don't let it get the best of you. Keep us posted.


Posts: 1
Joined: May 2015

I was diagnosed with an ENB in December 1999. It was within a half of an inch of growing out of my nose, throughout the right side of my face (in my sinus') and up to the lining of my brain.  Our local hospitals didn't have any experience with ENB's and referred me to Tufts in Boston.  I'm so grateful to live an hour from Boston, which is considered the medical mecca of the world. I had an eleven hour craniotomy with the Chief of Neurosurgery and an amazing Otolaryngologist who was part of the first ever face transplant team.  I was cut ear to ear and my forehead was removed. My forehead bones were reattached to five titaninum plates and replaced. I lost my sense of smell, but honestly my feeling is if you are going to lose one of your senses that would be the one I would choose to lose first. It was a very small price to pay in exchange for my life. I mean, there are some things in life that nobody should have to smell...lol :) I had six weeks of radiation, but no chemo. Although there is very little known about ENB's, they do not that chemo is not really necessary in most cases. My surgeon's said it's rare for ENB's to metastasize to other parts of the body. They keep a close eye on me via MRI's. I sent them Anniversary cards every New Year's Eve (the anniversary date of my surgery). So, I guess I can happily say, I'm a 14 year ENB survivor and each day is a gift. Smile

Posts: 4
Joined: Apr 2004

It's been 13 years now and I have had no major issues or scares.  I stopped getting MRI's and annual checkups three years ago, and other than getting old and fat, I am in good health.  I still cannot smell but that has not slowed me from eating!  I also still have a good sense of taste and humor (for the most part).  Of course the older, I get (now 53), I worry more and more about the big C returning.  I have had it so easy over the last few years, I lost track of how lucky I was and blessed I have been.  Anyway, God bless you all.  I know the not knowing and waiting is the worst part.  Just stay strong and keep moving forward!  

Posts: 1
Joined: Apr 2017

Hi This is the story about my Dad. He was diagnose with Esthesioneuroblastoma is 1992. It was stage C grade 3. It was extended to orbit, intracraneal compartiment and base skull. He went through hell. He had a major Surgery when they remove the tumor. He suffered complications after the surgery he had an infection with intracraneal hemorragea. He survived. 

He went through the maximun radiation that a person can received. He got almost a full 6 months of radiation. He lost his nose so they had to do facial reconstruction. However, he is still alive. Every year he goes back to be re-evaluated and no signs of the cancer back. Finally 4 years ago the doctor clear him. He had so many limitations that make his life a litle difficult at times. He has to use irrigations for life since he lost all the nasal cavities, his base skull was removed and he had a metalic for replacement and he gets so many headaches due to all the damage and years of irrigation on the area but hey HE is still alive, he is healthy, he continues with his profession, he is a GYN doctor and on top he lives in Cuba.

His surgeon was the best Dr. Shah, Jatin Head and Neck Oncology at the New York Memorial Sloan Kettering. I called him my family angel. HE is the best!!

There is hope, don't give up. It is better to be aggressive since the begining, don't try to go the easy way go aggressive like my dad did. He also didn't had a choice because the tumor was too advance he was terminal doctor gave him only a month to live and look 24 years later he is still here!! So please if you have any question about it ask me I am here to help!

Posts: 2
Joined: Aug 2017

I was diagnosed with esthesioneurblastoma in April of 2017. I have had three surgeries - two to remove the tumor because there was tumor remaining after the first surgery and one to remove a blood/clot brain bleed caused by the first surgery. I switched to a University of Michigan doctor after getting a second opinion which was the best thing I could have done. I have almost completed my fourth week of radiation and have two weeks to go. The worst side effect that I have had is a rare side effect of head and neck radiation called phantosmia. I am experiencing an AWFUL odor all of the time which has also affected my taste making food taste awful and impossible to eat. My doctor has prescribed anit-siezure and anti-nausea medications which take the edge off but I am drinking my meals and just doing my best to get them down. Has anyone else suffered from phantosmia and, if so, did it go away after your radiation treatments were completed? I would greatly appreciate any information I could get. Thanks so much. And to all my fellow esthesioneuroblastoma warriors - keep up the fight :):)

Posts: 2
Joined: Sep 2017

I was treated for ENB in my sphenoid sinus in 2009-2010 at age 63.  I had multiple sinus surgeries, 33 radiation treatments with chemo, and four months of chemo.  I went through many of the pains and troubles described in this blog.  While grateful to be alive, radiotherapy left me with permanent collateral damage in several ways.

My worst problem is a complete inability to sleep naturally.  I never doze, nap, yawn, feel sleepy or sleep naturally.  Under the care of several fine doctors, I use various sleep aids nightly.  Nevertheless, I live with great fatigue.  I am otherwise in good health and have no anxiety issues.

I'd like to blog with any ENB survivors that have an extreme sleep issue. 


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