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Esthesioneuroblastoma

lborntrager
Posts: 1
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!

marysueb
Posts: 1
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"

Oh.

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
09.

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,
MarySueB

Andrew71
Posts: 2
Joined: Feb 2013

 

 

 

Asmom905
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
jedsnearlythere
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

CAROLANNVO
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.

paul22222
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.

Chuck2339
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.

kpanciera
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?

jnoelle77
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.    

 

 

 

 

kpanciera
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!

 

KP
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??

Karla

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.

KP
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.

Karla

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