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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!

msjr
Posts: 2
Joined: Jun 2010

Hi Kathleen, I was diagnosed with ENB October of 2005 as a 37 year old female. It started as a polyp in my nose and upon further inspection we found out it was ENB that had invaded my brain as well. I immediately went to the Mayo Clinic in Rochester, MN and had surgery to remove all of the cancer. Then in February I started my 8 weeks of radiation. No chemo was done at that time. The radiation was not too bad with the exception of hair loss, thrush, and loss of taste for awhile. I am happy to report that I have been cancer free going on six years!!! Hang in there and know that things may seem bad right now but there is hope! Good luck and God bless!

Maria

SIRENAF42's picture
SIRENAF42
Posts: 204
Joined: Oct 2008

Hi Kathleen, I was diagnosed in 2008, ENB in my Ethmoid sinus and nasal cavity. 2 endoscopic surgeries and the 6 weeks IMRT radiation treatments. As of Dec 2010, still cancer free.

Please feel free to email me at sirenaf44@yahoo.com if youd like to discuss the treatments and what some of the side effects may be.

Hang in there!!

mom2.4
Posts: 3
Joined: Apr 2010

Yes, my daughter is still cancer free, going on 3 years!!!

Amynicole0116's picture
Amynicole0116
Posts: 2
Joined: Aug 2011

I am now 23 and so far, so good! I had a couple surgeries and radiation to get rid of it. Mine was the size of an acorn and apparently it was caught pretty early. Does anybody know if they're close to finding out what causes this? And what is the likelihood of it coming back?

SIRENAF42's picture
SIRENAF42
Posts: 204
Joined: Oct 2008

I asked my doctor what causes this type rare cancer, he told me that it was nothing I did (smoking..etc) but that he believed it to be environmental. I have talked or met atleast 5 - 8 people with our form of cancer and out of the 8 - 5 of us all had either worked in an environment that did wood work or did the hobby at home. I asked my dr, and he said that wood dust is a know carcinogen (spelling)... I still work in a cabinet mfg company, my office is as far away from the plant as possible :)

The others, we had nothing really in common.

Amynicole0116's picture
Amynicole0116
Posts: 2
Joined: Aug 2011

Do you know if a real wood burning stove in a small house would be considered as possibly causing it? We had just moved to a new house and my dad was obsessed with that thing...

Chuck2339
Posts: 10
Joined: Jun 2012

I asked my docs these questions. What causes ENB? Because it is so rare there is not enough history to accurately identify possible causes. What is the possibility of recurrence?  This one they danced around a bit. First, recurrence % goes up depending on the severity of the original case. Caught early and recurrence % is low. Then they told me that of the cases where they had seen recurrence, it typically happened 4-6 years out from original surgical removal. But they also said that recurrences aren't common. However, you read the histories on this Board and you see that there are some ENB sufferers that have had recurrence. Bottom line seems to be that there just isn't enough history to accurately predict which cases will recur. For me, I take life one day at a time. So its, "my cancer didn't recur today!" I'll check again tomorrow. When (if) it does, I'll deal with it. Until then, I am determined to not let cancer have another minute of my life. Stay positive!

TracyR1966
Posts: 1
Joined: Oct 2011

Hello. My son Thomas was diagnosed with Esthesioneuroblastoma in December of 2009 when he was 16. He was first misdiagnosed with juvenile angofibroses. During the surgery to remove the grapefruit size tumor, they found out it was cancerous. We were very blessed to have a doctor who didn't even work at the hospital we were at, overhear the other doctors discussing my sons case. He told us NOT to do chemotherapy, as it does not work on this type of cancer. He recommended 7 weeks of proton radiation therapy in Jacksonville. With a chemotherapy "kicker" to boost the radiation. For 7 weeks, twice daily he underwent proton. It was not a easy journey for us as I'm sure you know. He's survived 12 hour surgery as well as many, many shorter surgeries.
Today, he is still cancer free! Thank God and Dr. Lanza

JPelar's picture
JPelar
Posts: 2
Joined: Feb 2010

Yes, I call my estesioneuroblastoma Esther. Diagnosed in 2010. Three surgeries (including one to remove Esther, one to remove neck lymph nodes, and a third to remove a feared metastasis in my lung which turned out to be negative), plus 30 shots of radiation therapy to my head, all at Johns Hopkins Hospital. All clean now thank goodness. I decided to try to make lemonade out of lemons, and so I wrote of the highs and lows in a book called "Coping with the Big C - Compassion." It's available at Amazon.com and gives a good idea of what each of you are facing, or perhaps what some of you went through. Plus, it's kind of funny because I use humor to get through stressful situations. Hope you like it, and hope it helps.

kian
Posts: 2
Joined: Nov 2011

I also have a child who who has been treated twice for ENB. Both occasions he had surgery followed by radiation, the 2nd treatment was the neck lymph nodes. This time around, 1 1/2 years since diagnosis, the cancer has spread to his chest lymph nodes. He is now waiting for his chemo *** radiation. His tumor is the grade 4 type, supposed to be very aggressive.

Does anyone have a similar experience, a grade 3 or 4 that has pread to share. thank you

MrBill1962's picture
MrBill1962
Posts: 1
Joined: Nov 2011

Hi, I've recently been diagnosed with esthesioneuroblastoma. It went misdiagnosed as a bad sinus infection for a month before someone wised up and did a CT which came back abnormal. Following this I had a Biopsy and then a PET scan to discover how badly it had spread. Thankfully though large, it is contained in my sinus and nose cavity on my left side only.

I've completed my first round of chemo (3 types) and start my next round on 11/15/11. I met with my surgeon today and was informed that surgery is the final solution no matter how successful the chemo is. Following that, radiation.

I'll likely lose my sense if smell and taste as well. Not very excited about that but reading the responses here, it seems to vary wildly with each person. Maybe I'll get lucky :/

I welcome any responses.

KS
Posts: 7
Joined: Jun 2010

Seek out the docs at UPMC. I had found mine late as well. It was already into my right eye and lymph nodes in my neck. My doc told me only solution was cranial surgery and radiation. That is when I did my own research and found UPMC. Had endoscopic surgery there. Was in and out of the hospital in three days and only a scar on my neck. Followed with four months of radiation, which was the worse part, back at a local hospital. I am at the 2 year mark and no reoccurance. I am, however, having side effects from the radiation. Small price to pay for being alive. Have come to grips with never being able to smell ever again. I have very little taste. Most people do not know that 90% of taste is through smell. Contact me if you have questions. smith2901@comcast.net

tesa's picture
tesa
Posts: 120
Joined: Feb 2011

KS,

Did they have to remove your eye? Who was your doctor at UPMC? Also how are they able to do four months of radiation? I thought the standard was always 6 or 7 weeks.
My mother has paranasal, which is similar to ESB.

KS
Posts: 7
Joined: Jun 2010

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
Posts: 7
Joined: Jun 2010

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
Posts: 7
Joined: Jun 2010

Web site acting up and repeating everything. Sorry

JPelar's picture
JPelar
Posts: 2
Joined: Feb 2010

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

namaste
Posts: 11
Joined: Jul 2009

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

namaste
Posts: 11
Joined: Jul 2009

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

namaste
Posts: 11
Joined: Jul 2009

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

SIRENAF42's picture
SIRENAF42
Posts: 204
Joined: Oct 2008

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 :)

JayWade65
Posts: 2
Joined: Jan 2012

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.

JayWade65
Posts: 2
Joined: Jan 2012

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

marfo
Posts: 1
Joined: Apr 2012

Hey everyone,

I have some questions about this cancer and this forum seems like a good place to post.

My dad was diagnosed with ENB in 2007 after a routine surgery to remove nasal polyps. He was sent to Mayo in MN where he had surgery followed by radiation and some chemo. Earlier this year in January, just short of the 5 year mark, at one of his routine 6 month checks, they found another spot in his nose (PET scan remained clear) so they removed it. He returned to Mayo last week to get an MRI to check the surgery results and although the spot is clear, the doctor noticed a suspicious lymph node. A biopsy showed cancer cells. A PET scan has revealed that the cancer has spread to his lungs.

I don't know how to process this information. It seems so quick that this has spread since his scan in January. Could it just not have showed up yet back then? This news is completely devistating to me. I am hoping to find some good information and maybe some positive stories from people. This seems to be the place. Any support would be wonderful.

Has anyone had any mets? They plan on doing more chemo to see if that will shrink it, and if it does, they can then do radiation. Is surgery ever an option when it was spread to the lungs? I don't want to throw too many questions at my parents...

Thank you in advance...

angel1974
Posts: 2
Joined: May 2012

In all reality, we all have trials to face, we all have mountains to climb, and we all have fears to overcome. I also think it's safe to assume that we compare our own personal struggles to everybody else's and believe our own to be more severe. With that being said, I have someone for you to compare problems with, ME. October of 2011, I was working concrete, but I was looking forward to the winter months because I would soon be working at a ski resort. One day at work, my nose started gushing blood like a tap and I was rushed to emerg. After a number of useless appointments, I finally got an appointment to check out the source of the problem. On November 16th I was told I have a tumor in my right nasal cavity. I was in for a biopsy a week later. I knew it was benign. "There is no way it's cancer. I'm 19!" I fooled myself until December 3rd. I received a referral form from the doctors secretary that I was supposed to take to a hospital in Toronto. As I looked over the form, I saw this word, esthesioneuroblastoma. The first line of it's Wikipedia article states, "Esthesioneuroblastoma is a rare form of cancer..." Imagine reading that 17 days before you turn 20. Talk about shock. The whole month of December was appointment after appointment, running back and forth downtown. I was told that they would do radiation and then surgery. I was lucky enough to have a nice radiation oncologist and very confident surgeon. I started radiation January 5th and had treatment on Monday to Friday until February 8th, 25 treatments in total. Near the end of it, I lost the little facial hair I had, and most of the hair on the sides and back of my head. I lost over 20lbs throughout the whole thing; quite a bit of weight considering I was a toothpick to begin with. The skin on my face and neck went internally red as if with 2nd degree burns. I ended up with canker sores all over the inside of my mouth, and the whole right side of my tongue had this ugly open wound that would not heal. Thick saliva also set in. It would get so thick that I would gag if I tried to swallow it. It would hang in blobs if i spat it out, as if it was gelatin. Eating became difficult and I was forced to drink meal supplements. I lost most taste, and what I could taste was less than desirable. The fatigue and lack of energy that came with it may have been one of the worst parts, I entirely lost all willpower. At one point I was ready to give up. Thank God he placed friends and family around me to get me motivated to keep on fighting. Since the end of radiation, I have healed quite well. Energy has returned and I feel motivated to move around every day. The ability to eat is back as well as nearly 15lbs. It was basically a month today, since the end of radiation treatment. Now we come to the exciting part of the story. The progression of esthesioneuroblastoma normally happens like this. It starts growing on your olfactory nerve, the part of your nose that smells. This is all the way up the nasal cavity above the eye, protected by the skull. It then grows with gravity and hangs down the nostril. Mine got a little funky and spread into my maxillary cavity which is the large cavity behind your cheek bone. It continued growing until it filled the whole cavity then started eating through the roof of my mouth. Three days ago, March 6th, I had an appointment with one of the three surgeons performing the operation. He gave me an idea of how they plan on doing the surgery. I will warn you now, if you don't think you can handle a somewhat graphic description, you should definitely skip this next paragraph...

The plan so far is to start cutting beside my nose, down to my lip. Peel the skin back off my cheek. Remove my cheek bone so they can reach the tumor in that region. I will lose all the teeth from my eye tooth to my wisdom tooth on that side because the roots have been grabbed by the tumor. The next step will be to take a part of a small triangular bone from my shoulder blade and use it to replace the palette of my mouth. That piece of bone comes with muscle so they will have to incorporate some new blood vessels underneath my skin and down the side of my neck. They will cut into my neck so they can attach the vessels there. Then with miniature equipment they will go up my nose and remove as much as possible. Hopefully with this procedure they will be able to remove all the tumor, but if there is any question, they will have to continue with another "cut." They only plan to knock me out once so if this is the case then the surgery will continue. The next step will be to cut from one ear to another over the top of my skull. Lift the skin off my forehead and remove the top portion of my skull. My stomach still cringes at the thought. They will then be able to get to the olfactory nerve and be able to remove 100% of it. Between the brain and the sinus cavity there is a protective leather like covering. If the cancer has started eating through it then they will have to cut into my thigh and take a piece of similar fabric from there to replace that brain covering.

After all this is said and done, I will have been unconscious for anywhere from 6-12 hours. I'm scared out of my mind.

It wasn't until yesterday that they finally gave me a date. April 11th at Toronto General Hospital. This is when and where all this is supposed to go down. They estimate 1-2 weeks in hospital, and 2-3 months before I'm back to somewhat normal; but one year full recovery. I will lose my sense of smell completely but thats a small price to pay for my life. My eyesight will not be affected even though the tumor is pressing up under and beside my eyeball. I won't have teeth on the one side for a year at least. Implants can't be considered until I'm healed and a clip on denture may be my only option at that point, depending on the strength of the bone.

He is also debating on doing a detox and natural herb way instead of doing this surgery..He has posponed his surgery that was to take place early april and trying the natural path first..I myself his aunt needs to know has anyone else out there tried that first or have any thoughts on this..He also speeks about the alkline level as long as it is high cancer can not grow..his back ground is his parents do not believe in doctors the believe in the natural way of living..Can anyone give us strond advice as I do not know if he is running out of time..He is considered late stage c....Please help anyone..

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hello...I am not sure if two different people wrote this post, or if you, his aunt, wrote it like you were speaking for him? Is the April 11th surgery on hold now? I am confused....

Anyway, I am not in the medical field and I don't have any deep pool of wisdom to draw from...and I hope I don't anger those who are into natural living and herbs etc....but my unprofessional gut reaction to doing detox and herbs instead of surgery is--NO WAY. I think it's like taking a perfume atomizer and filling it with water and using it to fight a forest fire. What did the doctors say when your nephew told them he was thinking of detox and herbs instead of surgery?

But like I said, my opinion is worth about two cents. All of my research and all of my efforts, and all of my son's fighting spirit and all of the treatments we have tried have not been very effective in combating his brain tumors. So who knows. I sure can totally understand your nephew's desire to try something other than that surgery he described. It sounds like an absolute tortuous nightmare. Just please do not waste valuable time...if you don't see positive results pretty fast, please quit the herbal and detox strategy and go for the surgery ASAP.

I really hope that your nephew is successful in beating this disease. It's beyond wrong for a 19 year old to have to face this. But his young age is a huge asset and will really help his recovery if he chooses the surgery, and it also increases his chances for surviving this condition.

Please let us know what he decides and how he is doing. I really am emotionally invested in everyone on this site and I deeply care and want to know how they are doing. I will be thinking of you/your nephew and praying that he is an overcomer.

Love and blessings,
Cindy in Salem, OR

angel1974
Posts: 2
Joined: May 2012

Thank you Cindy for the reply on my post..I am the aunt that wrote the little portion under my newfews story..He had this story posted on his face book and I went and copied it onto here..He wrote this story when he was going threw his radiation treatments...His doctors as far as I know do not agree with this..But what can they do about it.He is 20 and it lays in his own hands..I know far as I feel and seeing this on him everyday knowing he lives with me and my 2 children..we see the change in his face on a daily basis..He wants to try to give this detox 6 months to see if it works..But the sad part is he started with this detox over a month ago..I see no difference..But he claims there is one..He has a MRI coming up may 14 and he feels if his tumor as shrunk it is due to this detox..I informed him it could be due to the radiation treatment he had almost 3 months ago..That he can not determine and choose the detox over that...Plus he feels that threw his leaking nose that the tumor is coming out..I have mentioned to him that he should get that tested instead of living by assuming things..Facts I said support more then anything..When he asked his surgine about getting it tested the doctor told him there is no reason to as they know it is not coming out threw his nose..He keeps saying that the blood analyses informed him of this reg-amine that he is now on and that in time it should work..The blood analyses said they have seen this work in so many cancer patients..So I asked Dan my newfew did they state it worked for this type of cancer you have? He said that they said for all cancers..I do not know how to get him to see what he is doing...I also showed him pictures and shared storys with him from people with his type of cancers and he is still determined to go this herbal route..He has placed his alkline level high in his body..as he was also informed that cancer can not grow in high alkline..He truly believes this will work..My fear is he is at late stage B early stage c and that he has no time to screw around...As far as your question on the April 11 surgery..yes he has placed it on hold...:(

Utah Dave's picture
Utah Dave
Posts: 2
Joined: May 2012

I was diagnosed on June 7, 2005. I was 41 and had 2 boys (10 and 8). I had waited way, way too long to see a doctor about my "sinus infection". On July 13, 2005 I had three surgeries at The Hospital at University of Pennsylvania in downtown Philadelphia that took about 12 hours. Then I had 6 weeks of IMRT radiation also at Penn. Then I had 4 months of very nasty in-patient chemotherapy at Hershey Medical Center. The process was difficult. There were times that were pretty much unbearable emotionally. I lost 60 lbs (went from 212 to 152). And I am now going on 7 years clean. I am healthy and active and happy. The only real leftovers are some scars and no sense of smell. But I still eat like a horse and I can taste my food.

I go to the gym 5 or 6 days a week. I skied 22 days this past season (I now live in Utah). My oldest son in now 17 and just bought his first car. My youngest son is 15 and is an outstanding football player. I would not have gotten to see any of this or do any of these things if I had not gone "the traditional route" with my treatments. I had great doctors, great technology, great support, many prayers and a lot of luck.

I am not someone special. I am not a brave tough guy. I was scared out of my wits for probably at least the first 2-3 months after my diagnosis. But what I am trying to convey is that if I can make it through this, so can you. Having youth on your side makes a giant difference. Like I was told - you're healthy, but you have cancer.

I just discovered this web site today. One of the things I have tried very hard to do since I was given a second chance at life was to help other people. No matter how much I try to repay all the good things that were done for me while I was ill, it will never be possible. But I promise I will try.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Wow, Dave, thanks for sharing your history! It's absolutely wonderful to read about people like you who have been successful in overcoming this disease!

To Dan's aunt...what is your nephew's status? What did his MRI show, and is he still committed and doing the herb and detox treatment? I hope that he is getting the best treatment for his situation. Please let us know how he is doing.

Love and blessings,
Cindy

Utah Dave's picture
Utah Dave
Posts: 2
Joined: May 2012

I am amazed that there are this many people out there who had this same thing as me. I figured I'd go through the rest of my life and never come into contact with anyone else who had it. Somehow it makes me feel better to know there are many more like me out there. We kind of picked a "bad" cancer to get since it is so rare. Not a lot of research funding into this type since it doesn't effect that many people.

I'll bet this will be a familiar refrain, but ever since I got cancer it seems like there are an awful lot of people getting diagnosed. Maybe it is because medical science is better at diagnosing diseases than in the past. But I personally feel like there are just more people getting cancer. Probably people who suffer from the many other life threatening diseases feel similarly about their particular disease. I have to wonder how much of this is due to the environment we live in.

I spent 5 years working around heavy duty industrial solvents (toluene, heptane, xylene, VM&P naptha, MEK...)and another 10 or so working in a plant that makes rubber; lots of chemicals, dust, etc. I know that didn't help me. But I seriously wonder about our food, air and water supply. And there are too many young kids getting sick.

Chuck2339
Posts: 10
Joined: Jun 2012

- October 2008 I had, what I thought was, an annoying nose bleed. Didn't think much about it until a month later when I had 3 serious nose bleeds in two days.

- So, off to the local ENT who told me I was suffering from nasal polyps. So I was put on a series of steroids to shrink the polyps and ease the inflamation.

- Now its into December 2008 and the "polyps" hadn't gotten any better, so I was scheduled for a simple surgical procedure to remove the polyps. Surgery was scheduled for early January 2009.

- I awoke from surgery to the concerned faces of my ENT doc and my family. "Your condition wasn't nasal polyps. We suspect a malignant tumor and have sent a biopsy in for analysis."

- Upon hearing the results of the biopsy, my ENT doc immediately turned my case over to the ENT specialists at UVA Hospital (I live in Charlottesville), and Dr. Paul Levine in particular. I understand the he is one of the preeminent physicians in treating our rare cancer, Esthesioneuroblastoma.

- My case was identified as Kadish 3 as the tumor had taken up residence in my frontal sinus but had also invaded the cribiform plate and was attacking the dura, the outer lining of the brain.

- So, for treatment. Chemo followed by radiation. These treatments to finely define the tumor's margins. Then, finally surgery.

- Feb to March 2009; chemo. Sickness, weakness, hair loss. Not a fun time

- April to May 2009; 25 daily radiation treatments (they gave me the weekends off!) For the first 2 weeks everything was fine. The docs told me the effects of the radiation would be cumulative. Oh yeah. The last two weeks I was too weak to drive myself to the hospital.

- They gave me the month of June 2009 off to recover. Surgery was scheduled for July 9th 2009

- Two surgical teams. One, led by Dr. Levine was facial resection surgery to remove the tumor from the sinus and rebuild all the tissue that had to be removed. Evidently, the first rule of cancer surgery is that, in addition to the tumor, anything it touches has to go. The other, led by neurosurgeon Dr. Mark Schaffrey was to do a cranial resection surgery to remove what tumor had approached my brain.

- I was on the operating table for 10 hours.

I had to sacrifice my sense of smell and most of my sense of taste. I can only discern sweet, salty sour or bitter. I have no ability to taste flavors. A good buddy of mine told me that no taste is not so bad. Now you can drink cheap beer! My nose is a bit crooked from where it had to be rebuilt.

But guess what? Now, nearly 3 years later I'm cancer free and back to living a normal life. I go back to see the docs every 6 months or so for them to look around. So far, so good.

ENB, although very rare, if detected early, is readliy treatable and recurrences are not that common. I really feel like I've been given new life and if you're facing ENB and live close enough, do consider University of Virginia hospital.

I'm thriled to be able to claim the title of Cancer Survivor.

paul22222
Posts: 3
Joined: Jul 2012

I read your story and is sounds exactly like mine (so far). I am currently at UVA for treatment. Have finished chemotherapy and am 40% completed with the 25 days of radiation. My tumor may be slightly smaller than yours was, however, the treatment plan is exactly the same.

I am curious to know how the surgery went and your recovery time. Do you know if your loss of taste is related to the radiation or the surgery?

I am glad to read your story and see that someone has successfully gone through what I am in the process of going through. Thank you so much for posting your story.

Chuck2339
Posts: 10
Joined: Jun 2012

Surgery, though very long and involved, went fine. Short stay in IC then less than a week in a normal room. The doc's told me I wouldn't feel like returning to work for at least 3 months after surgery; that I wouldn't feel 100% for about a year. Pretty good estimates. My loss of smell and taste resulted from surgery. The tumor had gotten tangled up in the olfactory nerves so all of it had to be taken out. Good luck with your surgery. The docs at UVA are among the best in the world dealing with this type of rare cancer.

paul22222
Posts: 3
Joined: Jul 2012

I was diagnosed one year ago today, went through the radiation, chemotherapy and surgery all at UVA.  Surgery was September 28th.  I returned to work full time on November 30th.  I was tired for quite a while and took a lot of naps.  I have been back to "normal" now for about two months.  Normal meaning back to my normal routine.  I am slowly getting back be as physically active as I was before the treatment started.  I can taste although I cannot smell.  I can smell the material in my nose that has to be removed every eight weeks though which is odd.  I rinse three times a day, once with a 50/50% hydrogen peroxide rinse which really gets the nose clean.  I use a humidifier at night too.  The only really lasting effect has been low grade pain where they entered my cranium but that is not everyday.  I also have bad breath, like wet gauze, that can be smelled more some days than others; it comes from the buildup in my nose.  I hope that goes away.  Turned 44 last month.

dwr9b1
Posts: 4
Joined: Aug 2012

I am newly diagnosed with ENB and feel that it was environmentally induced.Do any of you folks work for or ever work at a home improvement store like Lowe's, Home Depot, ACE? I would be inerested in any feedback. my email address is dwr9b1@mail.com. Thanks

Netracer61
Posts: 14
Joined: Jan 2011

I was diagnosed with EBN the first time in 2001.Like you I was having horrific nose bleeds that were frightening to say the least. My tumor had breached the skull and the dura, which led to the worst headache you could imagine along with an ambulance ride to my local hospital. Fortunately the csf leak sealed on its own and chemo began at uva with Dr Grosh, chemo did little to me, actually gained weight, the radiation sucked, i drove my self 110 miles each way 5 times a week for 8 weeks the last week I had to be driven there as I was to weak to even stand. I got to rest for a few months before Dr Levine and Dr Jane could remove the baseball size tumor from my head. I have had 3 re-occurances since then, the latest involved my left eye, another tumor attached to it that had again breached my skull and was working on trying to get back on my brain. They were able to save my eye but it is still closed up and sore to say the least. I may be going back to have the eye removed, but not sure yet. I do know that this black cloud called cancer is determined to kill me,and I am getting tired from the 5 fights that I have had with ENB. I am in counsling now trying to get my head straight. I will be going back to UVA for another MRI in mid january, I guess I will find out what the next fight will be then.

jedsnearlythere's picture
jedsnearlythere
Posts: 9
Joined: Aug 2013

Hi Chuck, I'm so glad your treatment went so well and you are cancer free, that is so great. Well done you for coping with all that :) The nature of your tumour sounds similar to mine, protruding into the brain and attacking the dura. Mine is also causing protopsis of my right eye and has fully invaded my right maxillary sinus aswell as my ethmoid sinuses..joy. I just wondered how the ENT entered the site to do surgery.. I too may have a double surgical team and i wondered if your ENT was able to go in endoscopically or through your cheek ?

I know everyone's tumour is different but I wonder what you guys' experience is, endoscopic surgery or through the cheek? i am really hoping I can get this done endoscopically. I'd be grateful to hear your experience...

Chuck2339
Posts: 10
Joined: Jun 2012

The part of the tumor that was in my sinus was evicted by surgery through the cheek. Facial resection surgery (whatever that means). In addition to the tumor, my olfactory nerves had to go. Now I can't smell or taste anything. That's a new sensation to get used to!

The part of the tumor that escaped through the cribiform plate on its way to the brain was removed by cranial resection surgery. I have a scar that runs across the top of my head to testify to that. Fortunately, my hair covers the scar. Total time on the surgeon's table - 10 hours. I guess good work does take time.

Chuck2339
Posts: 10
Joined: Jun 2012

I had initial surgery in July 2009. So far cancer free since then. No side effects.Typically, I go back and see the docs two or three times a year for them to look around.

CAROLANNVO
Posts: 4
Joined: Dec 2003

What hosital is he going to? The herbal has never proved successful. Have the surgery and have it behind you. You are too young to fear. I have been cancer free for 11 years after surgery and radiation at M.D. Anderson in Houston. Please do not delay. It is a slow growing cancer, but you can not test the bounds of life.

Chuck2339
Posts: 10
Joined: Jun 2012

With the surgery that is the usual ENB treatment, a significantly altered sinus landscape is the typical result. If your situation is like mine, you may have to irrigate (rinse) daily with saline solutuion to keep the crusting down. My problem is that regardless of the rinse solution combinations I've tried, the crusting still builds up and the docs have to remove it.

I've tried adding Johnsons Baby shampoo to the saline solution and I've tried adding hydrogen peroxide to the saline solution. Neither of these solutions have been successful at keeping the crusting down.

My question is: Have any of you ENB survivors found a treatment that works?

namaste
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 irritating) 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.

namaste
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.

Elliot16
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

Chuck2339
Posts: 10
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.

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.

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