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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!

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SIRENAF42
Posts: 204
Joined: Oct 2008

I was diagnosed with Ethesio... in Jun 2008, underwent suregery to remove the tumor and then 6 weeks of radiation at MD Anderson in Houston TX. My last treatment was Oct 1 2008. My 30 day check up was in NOv and my drs were very pleased with the results. I go back in March for my next check up... I am sooo excited that I found someone else with my type cancer.. I cant wait to communicate with you.
Sirena

PBailey
Posts: 16
Joined: Jan 2009

Hello, I was diagnosed in October 2008 with early stage esthesioneuroblastoma. I underwent Endoscopic surgery in Pittsburgh (UPMC) in Nov and have just completed post op radiation using the CyberKnife on Friday 3/6/09. I now will have follow-up MRI's & chest x-rays every 90 days for the next few years and annually after that. I had never heard of this cancer and finding treatment options can be somewhat hard since there is no real "expert" on this cancer. I feel blessed since this was caught early and the procedures I choose were with little side effects, short recovery times and excellent prognosis' on the horizon.

pinkbear
Posts: 4
Joined: Apr 2009

Thank you for sharing your story. My husband was just diagnosed with an ENB, stage C, grade 1-2, which has gone into the cranial cavity. After our search and careful discernment, we have decided on UPMC as well. We share in the frustration that treatment options and data are uncertain due to its rarity. But hearing your story offers hope. We wish you well. If you have an words of insight for us, we would appreciate hearing from you. If anyone else has used UPMC, we would love to hear your experience.

PBailey
Posts: 16
Joined: Jan 2009

Pinkbear,
I traveled from Northern VA to PA and had my EEA surgery at UPMC Mercy, feel free to contact me if you need to chat. I had surgery in Nov 08, I have nothing but good things to say about the doctors there, who are you seeing?
Cheers and blessings,
Patti

pinkbear
Posts: 4
Joined: Apr 2009

Patti,
We just met several drs. today. Surgery is scheduled for a couple weeks from now. I would love to chat to see how things went for you. You can email me at llknox@sbcglobal.net if you would like.
Thanks for the posting.

edglenn
Posts: 2
Joined: May 2009

Hi

Mi name is Eduardo Glenn, form Costa Rica, with a Esthesioneuroblastma (orbit invasion, cribose plate erosion, complete blocking of the nose, fast growing tumor). I need an option for a endoscopic surgery or another approach, we don´t have the experiencie here in Costa Rica with this type of tumors. Do you know any other Center different as Pittsburgh? They have a cost basis of $180.000 for the procedure (Dr. Snyderman group). I know they are the best team for that but I need to pay myself for the procedure and this amount is impossible for us in Central America. I am trying to find another option more cheaper to save my life.

Any help will be nice.

Eduardo Glenn

PBJ Austin
Posts: 346
Joined: Mar 2009

Hi Eduardo, I don't know if this is any cheaper or not but MD Anderson in Houston is another highly rated cancer hospital in the US. I suggest you give them a call and explain your situation, I hope they can help. Wishing you the best.

theclassactman
Posts: 2
Joined: Jun 2009

I don't know what the cost would be, but I had my esthesionueroblastoma removed in April of 2007 at Rush University Medical Center in Chicago by Dr. Guy Petruzelli and Dr. Rich Byrne. Excellent hospital, excellent physicians

pinkbear
Posts: 4
Joined: Apr 2009

Eduardo, you might try googling endonasal approach to find other places who do this surgery. Although we had surgery with the Pittsburgh team of doctors, they travel the world teaching their technique to other doctors. I saw on-line there is a dr. at the university of north carolina who trained with the drs. in Pittsburgh who is now doing the surgery as well. It might also be done in Atlanta at Emory, and a place in California too. Hopefully it will come up when you google! Wishing you well on your journey!

KateB_Tallahassee
Posts: 4
Joined: Dec 2010

Eduardo; did you ever get help? the surgery?
I would strongly suggest Univeristy of Virginia (UVA)Charlottesville, Dr. Levin. It is a major research center for this SPECIFIC cancer, and when my insurance was not going ot pay for my craniofacial resection to remove the tumor, UVA negotiated for the best cash price for the surgeon, hospital, and all expenses in one package for me. I can give more detail if you or anyone is still in need of treatment. $180,000 is WAY TOO MUCH>
Please let me/us know how you are doing. Kate

namaste
Posts: 11
Joined: Jul 2009

We found experts for my husband at Memorial Sloan Kettering Cancer Center in New York City.

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famfrench
Posts: 7
Joined: Dec 2009

Yours was the first info I saw when I looked up this diagnosis. I have so many questions! I was just diagnosed 12/15, and scheduled for an MRI and Pet scan on 12/22 and surgery is scheduled for 12/29. I am still trying to digest everything and am having a really hard time coming to terms with what they say they are going to do to me. They listed an anterior craniofacial resection, medial maxillectomy, pericranial flap, and lumbar drain. They gave me a CD-Rom with some info but it is still hard to wrap my head around all this. Did you have any/all of these procedures?

Elliot16
Posts: 6
Joined: Jan 2009

able to share some good news....had surgery on 11/22/02 at age 52.....cranaiofacial resection followed by radiation.....while I have to irrigate twice daily...all else is good.....surgery was done at Memorial Sloan Kettering

alphamommy
Posts: 3
Joined: Jun 2010

I'm not sure where to add to this thread, so I just picked a spot!

I was first diagnosed in April, 2001. We thought I had polyps, but they were unable to remove the whole thing through my nostril. I had a cranial resection to remove the remainder, which included the right olfactory nerve. I have had all my treatment at the University of Michigan, by their Cranial Base team. They got negative margins, which dictated no radiation according to their protocol. My sense of smell was damaged, but I could still taste/smell a few things.

I had MRIs every 4 months until April, 2004, when a spot which had been believed to be scar tissue doubled in size. I had another cranial resection, this time followed by 6 weeks of radiation. At this point, my sense of smell was gone. I've learned to live with it - your brain is an amazing thing. You eat from memory - if it looks like a brownie, and has the right texture, your brain says it's a brownie!

I had a false alarm in 2008, which turned out to be scar tissue. However, it came back in Nov., 2009, and has moved to the right side of my head, outside my brain. Since it's so far from the original site, it's assumed to have metastasized to my spinal fluid. I completed 4 weeks of whole brain radiation on May 7, and am currently bald! I won't know if this took care of the problem until my next MRI in September.

For anyone looking for treatment options, I would highly recommend the University of Michigan. The doctors are fabulous, the treatment I've received has been great, and I feel that they've kept me alive this long.

Good luck to anyone facing this disease!
Tammy

Elliot16
Posts: 6
Joined: Jan 2009

I check here once in a while..not much activity...your seems to be the last post....hope all is well...hang in there

aajoxx
Posts: 1
Joined: Apr 2011

Tammy,

It is great to hear your wonderful experience from The University of Michigan. I also received treatment for esthesioneuroblastoma at The University of Michigan, under the care of the Cranial Base team. I was initially diagnosed in October 2008. I underwent two surgeries to remove the tumor followed by 7 weeks of radiation. I lost my sense of taste/smell after the second surgery, but you are spot on when you say that the brain is amazing! It truly does work off of memory recall!! I finished my radiation in April 2009. My MRI's have been clear, which I am extremely thankful for. I have my next 6 month follow-up next week, so I am crossing my fingers. I have been suffering severe bloody noses for the past six months, so I am hoping this has been caused by the reconstruction of my nasal cavity, which they said could possibly happen.

Good luck to you and anyone else facing this disease!

bennytoby
Posts: 2
Joined: May 2011

Am responding to this comment as it is the most recent entry. If there's anyone out there who would like to share their experiences, that'd be great. Was glad to find this communication network as I hear we are a rare breed of cancer patients. How or why we got it no one knows. Anyway, I wanted to share my story. I am a healthy, 60 year old, female. I also went to an ENT for nasal polyps, discovered during a routine trip to my family doctor. He tried to remove the "polyp" only getting part of it. When the pathology report showed ENB we were all shocked. He referred me to several terrific doctors at University of Virginia. Luckily we live close by. Am currently having 25 radiation treatments, to be followed by cranial resection which I am not excited about. It was good to read your story and would love to know if there's any more current stories out there. Oh, did anyone have any side effects, and what did you do?

Will update as time goes on. Hope all goes well.

lettielulu
Posts: 2
Joined: Oct 2011

My husband (67 yrs. old) has had 6 chemo treatments and will finish his 26 radiation treatments on this next Wed. Oct 26. His surgery will probably come sometime in the next month or so.

Am anxious to know how your surgery went.

He is being treated at Duke University Medical Center in Durham NC and we can't say enough about the entire staff here. In the beginning they consulted with UVA to determine the type of cancer he had and they concurred it was ENB. He has worked in his home workshop since his retirement in 1994 and the Drs. believe it is 'wood related'.

Am anxious to know how your surgery went and how your life is going just a few months after the end of your treatments.

Thank you, please e-mail us at lettielulu@bellsouth.net

12nicky
Posts: 2
Joined: Jun 2012

my husband was told last year he had they did they sugery got it all out he had radasion and chimo he had last mri they told us its all gone no more cancer he need to go back in 9 mounths they told us

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woozylu
Posts: 3
Joined: Sep 2013

My husband, 65 years old, just came home from having surgery and is getting ready to have the radiation in another week.  Just wondered how your hubby is doing...we don't know where it goes after the radiation and we are just a little anxious about the radiation...if you have any insight that would help us, we would really appreciate it.  Our surgery was done at Wake Forest Baptist Hospital in NC

dmpatt
Posts: 2
Joined: Dec 2009

I was diagnosed in Dec of 1998. Had the surgery followed by 42 treatments of radiation, and was ok for about five years. Then had a lymph node recurrence in the neck. That was removed followed by 10 doses of radiation. So far so good. I've developed a little meningioma from the first radiation, but it seems benign.
Originally, my ENT surgeon told me that the tumor broke apart when it was removed. It's possible that caused the recurrence.

Don't forget. They got the cancer. You're good to go, so go! And MD Anderson is one of the best. Getting the right docs--very important.

micah
Posts: 2
Joined: Jan 2010

hello,
i was researching on this specific cancer and found this....i was reading through so many of the peoples posts in here. My dad was diagnosed with esthesionueroblastoma in 1997...i was just about 13 at the time.we have been through it all id say..his first two operations were done at UCSF...the third i think was at LA as well as the fourth,chemo was at UCSF,radiation was in san francisco too...proton was in loma linda...then he underwent another operation and more chemo...his last doctor was in LA again and we did chemo again there last year...

veronica12
Posts: 3
Joined: Dec 2011

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

veronica12
Posts: 3
Joined: Dec 2011

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

theclassactman
Posts: 2
Joined: Jun 2009

I'm a two year survivor of this cancer (my surgery was in April of 2007) I'm interested in knowing if any other survivors of this rare cancer were users of Zicam nasal spray prior to contracting the disease. I read last night that yesterday the FDA recommended that consumers stop using Zicam because it can cause damage to the olfactory nerve. The parent company of Zicam has already settled one law suit in 2006 filed by over 300 class action plaintiffs who lost their sense of smell after using Zicam. Doesn't seem like a leap of logic to me that a product that can cause that kind of damage could also cause cancer of the olfactory nerve.

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

Never used Zicam, I too am a Esthesio survivor. I believe mine to be related to environmental, mainly wood dust.

pinkbear
Posts: 4
Joined: Apr 2009

My husband had surgery at UPMC for ENB in April, 2009 and is undergoing proton radiation therapy now. Doctors asked him if he did a lot of wood working or used wood glues, which he did not. He also never used any nasal sprays prior to his diagnosis.

mom2.4
Posts: 3
Joined: Apr 2010

My daughter is an ENB survivor and, no, she never used Zicam.

veronica12
Posts: 3
Joined: Dec 2011

how is she now if you do not mind me asking

namaste
Posts: 11
Joined: Jul 2009

MY HUSBAND HAD ESTHESIONEUROBLASTOMAECTOMY 8/06 AND DOING FINE--EVERY 6 MO MRI. 64 year old never sick a day in his life prior to diagnosis-never used nasal sprays.

jimwatson723
Posts: 1
Joined: Sep 2009

Wow. Just ran across this board today. I was first diagnosed in Nov 2005 after undergoing a "routine" sinus scraping to remove a chronic infection. After hitting a growth in the sinus cavity the ENT took the steps he deemed necessary to control the profuse bleeding. Testing of the tumor revealed Estesioneuroblastoma. For such an extremely rare cancer, I am surprised to find all these posts here today. Once identified (was misdiagnosed the first time) I had 6 weeks of radiation. Then, scans every 6 weeks, which dwindled to every 3 months, then every 6 months.

In November 2008 I began having symptoms of a tingling and/or numb left arm. Long story short, tests revealed enlarged nodes in the left neck. When antibiotics failed to address the issue I went in for a neck dissection with Dr. Guy Pettruzelli at Rush University in Chicago. During the surgery he found that the tumor (identified as the same olfactory neuroblastoma) had broken through the nodes and had begun invading surrounding muscle tissue. After a minimal healing period I went in for another 6 weeks of radiation targeted around the neck and chest, which completed in May 2009.

Now preparing for the regular scans, which begin again next month.

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

When I was first diagnosed in May 2008, finding someone with ENB was difficult. Since I completed my treatments I have met atleast 5 people. Most with the same issue, mis-diagnosed the first go around.

I worry abour re-occurrence, but try not to think about it, but sometimes, its just hard. The people that I have met that are past the 2 year mark, have all had some sort of re-occurrence.... so the Olfactory NBlastoma had gone into your nodes and spread from there? Its just weird, and I know as a cancer patient we tend to link everything to cancer, but my left arm goes numb when I sleep, often...

okay sirena... Get off the ledge.... breath LOL I guess when I see my doc this Thursday, I will mention it. Maybe its from being on this computer too much :)

Please keep me posted on how you are doing. You can email me here or at sirenaf40@aol.com.

Sirena

KateB_Tallahassee
Posts: 4
Joined: Dec 2010

Sirena; it is good for me to hear from someone who is as open and forthcoming about how crazy this (ENB) cancer can make us.

I just want to urge you and all of us to find a support group or see a counselor now, let the stress out to someone other than family or friends.

I waited too long - denial has been a comfortable place for me for all these 11 years and one recurrence. I guess I was storing it all inside somewhere, and recently it came to a head. But, just want to say to EVERYONE facing ENB or any brain cancer - that going to get help when you really don't feel you need it is the best way.

Go before you fall off the Denial Train, or so you never have to. I am an old-fashioned boot strapper, and just kept trudging along. Think I was trying to keep being that "brave" person who everyone admired, and depression/anxiety kinda snuck up on me. I was fearful to face the need for mental and emotional support outside my (very supportive) family circle.

Have longed for a support group for a long time - jealous of breast cancer groups that are a dime a dozen (not meaning to be crass). But finding a brain cancer support group is d-near impossible. Spoke to my ENT/oncologist today and he admitted that it's hard, but that I really needed one that includes primarily ENB patiets, so I searched out and found this site.

Getting counseling early would help any of us find out where we REALLY are on issues of health, longevity, career, dreams, hopes, prognosis, feelings....rather than just moving on through and moving on following treatment.

Don't be like me and wish you hadn't waited so long, cause the need for it wasn't glaringly obvious.

BLESSINGS AND A PEACH-FILLED CHRISTMAS TO ALL.

KP
Posts: 4
Joined: Sep 2013

Hello, my name is Karla and my husband has had an ENB recurrence in two cervical lymph nodes. My hubbie started his battle back in 2008 with two surgical resections (both endoscopic and the last surgery lasted 19 hours), seven weeks of radiation, and three rounds of chemotherapy (cysplatin and etopisde). It was a pretty horrible experience and I'm pretty sure we both had PTSD from it.We were blessed with 5 years of remission. Hubbie has been vigilant with surveillence follow up which found a recurrence. Now we are facing this new battle. Hubbie has had a neck desection and the recommendation is now radiation. Anyone out there had a lymph node recurrence and can tell us the recommended algorithm for treatment at the facility that they are receiving care at?  I have done quite a bit of reading and noted the Mayo Clinic study which found some benefit with chemotherapy for some patients. UpToDate states that some patients are receptive to chemotherapy agents. 

Anyone and everyone that has had a metastasis I would greatly appreciate your feedback...

Karla

namaste
Posts: 11
Joined: Jul 2009

My husband(esthesioneuroblastomaectomy 8/06) and I attended the WEEKEND OF HOPE for the first time this year....an annual event every May in Stowe,Vermont for cancer survivors. First time attendees and a guest attend free the first year. Workshops are abundant. As we joined in at the closing ceremony atop the mountains adjacent to the Trapp Family Lodge it was with great restraint that I did not break out into...THE HILLS ARE ALIVE WITH THE SOUND OF MUSIC AND SO ARE WE ! Cancer is part of our journey not our destination. NAN

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

How beautiful that sounds..... you should have started singing, you may have lead a choir :)

namaste
Posts: 11
Joined: Jul 2009

hearing your kind words reminds me of a cool refreshing breeze on a sweltering day.....I thank you. I do hear your worry ..........NAN

namaste
Posts: 11
Joined: Jul 2009

My husband and I have been taking Maitake Extract since his diagnosis 8/06. I know there are cancer centers in the US that are doing studies on this extract. Literature is available describing it's tumor inhibitory effect,immune system enhancement and the effect it has on hypertension. WWW.MAITAKE.COM

Alison6971
Posts: 2
Joined: Oct 2009

Hi Everyone!

I was diagnosed with esthesioneuroblastoma on August 20th...a complete shocker after thinking I was going to receive a clean bill of health following sinus surgery to remove a "polyp" (I was later told that he removed 90% of the tumor). My local doctor referred me to Dr. Alexander Chiu at the Hospital at the University of Pennsylvania. I met with him the following Monday and was scheduled for surgery on September 24th. So far so good. Dr. Chiu removed remaining part of the tumor (which was 0.6 cm) and whatever was around it until he felt certain the area was clean. Thankfully, the neurosurgeon wasn't needed. At my last appointment on Tuesday he said I was healing very nicely. :)

Up next is my appointment with my radiologist/oncologist on Monday. For those of you who have had radiation...what kinds of side effects did you have? Teeth problems? Vision problems? Fatigue? Did you lose your sense of smell, even if it was only temporary? Did you lose your eyebrows and eyelashes (silly question I know, but still, I want to know LOL).

So far, I feel like I have had the best possible outcome of a very bad situation. I don't know if that is a false sense of security or not. I can't say enough about Dr. Chiu. He is amazing and I HIGHLY recommend him. He is extremely knowledgeable and his bedside manner is wonderful. Hopefully I can say the same for the radiologist/oncologist.

PBailey
Posts: 16
Joined: Jan 2009

Hi Alison,
I too thought I would get a clean bill of health after my routine "polyp removal" and NEVER expected my diagnosis of Esthesioneuroblastoma on 10/06/08. I do believe that the initial surgery removed all of the "tumor" however I still underwent endoscopic resection (@UPMC Pittsburgh) of the olfactory nerve & blub on the left side (there were additional cancer cells found during surgery) in Nov. 08. I wonder now if radiation would have "gotten" them. I had CyberKnife radiation in March 09 and have had clean scans since that time. Still on the every 3 month cycle but hopefully will continue to be cancer free.

With the CyberKnife I had very little side effects, the treatment was completed in 5 days and I had a few dime sized bald patches of hair where the beams were concentrated and a little redness of my cheeks. Other than that just the usual tiredness. My radiation was concentrated on the surgical/tumor bed and did not effect the saliva glands at all which I understand can be hard.

Currently I cannot smell and do not know if that will ever come back, although technically it could, since I still have the right bulb and nerve, my local ENT is not ruling it out for at least another year and I remain prayerful.

I wish you well on your journey, my advise for you would to ask many questions, read as much as you can handle and take notes to the doctors, but in the end choose the best treatment for you! You will be in my thoughts and prayers.

Blesings,
Patti

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

Hi Allison.

I was diagnosed with Esthesionueroblastom May 2008. I too went in for a routine polyup removal, twice..... They removed the first one, 6 months later another had grown in the exact same place, same size. They removed that one, and the lab results showed the cancer. I had a total of 3 endoscopic surgeries and then was referred to MD Anderson for 6 weeks of radiation treatment. Your questions are normal, and you should never be afraid to ask. I had to have 2 teeth pulled before treatments as they had old silver fillings and they felt the decayed teeth would not survive after radiation.

Side effects for me started about 2 weeks into radiation treatments. My eyes became, and still are, very sensitive to the sun light, I have to always wear sunglasses outside and I have noticed some vision change. I had severe dry nose and dry mouth, in which I had to use a nasal rinse and mouth rinse to clean. You could and most likely will lose your saliva during radiation. So drinking A LOT of water is very important in keeping your mouth healthy. I lost my sense of taste and smell around the same time, week 2. I lost a small portion of my right eyebrow (where the radiation went in) and lost about 4 silver dollar size spots of hair on the side over my right ear and 2 on the back of my head. Where the radiation goes in, the hair will not grow back. where the radiation goes out, it kills the hair and it just slowly breaks off, but it will grow back. I actually cut mine short during treatments so I wouldnt have to mess with it. I was really tired the last couple weeks, and wanted one less thing to worry about.

I was surprised and did not expect the radiation mask. You can go to YOU TUBE and key in Radiation Mask, and you will see some videos people created explaining what it is and how it is made. I didnt know about it, and was not at all prepared for it. Its nothing bad, just not what I expected. Around week 4 of treatments, I couldnt eat anthing that was dry and mostly drank Ensure, smoothies and shakes, soups, oatmeal and liquid type meals. Food had no taste nor smell and chewing was impossible to do without saliva. I lost about 40 pounds during my treatments and months recovering from treatments.

I am now 1 year past my last radiation treatment. Cancer free :) I will tell you, the 3 - 4 months after radiation, was harder than the radiation. I can only smell every now and again. Its like I get a hint of smell, but nothing major. My tastebuds have returned about 80%. I cant eat anything acidy (tomatos, oranges, etc.) nor spicy. My hair has grown back, the same color and texture as before (well a lot more grey)

2 weeks ago I had laser surgery of my sinus's to remove the scar tissue caused from the surgeries and to repair the damage from radiation, and for the first time in over 2 years... I CAN BREATHE THROUGH MY NOSE... its the little things we take for granted :)

I didnt have anyone who knew anything about what I was going through when I was diagnosed, and am always available to help you whenever you have questions, are scared, or just need someone to talk to. Soo please feel free to email me at sirenaf40@aol.com so we can exchange numbers.

I also have some pictures of my mask and the treatment I went through I can share with you. Good Luck, stay positive and think HAPPY thoughts... cancer is just a bumb in the road, it does not define who we are and what we are meant to be!!!!

Cancer Free since 2008
Sirena

namaste
Posts: 11
Joined: Jul 2009

Radiation,post-esthesioneuroblastomaectomy 8/06 for my husband was a 6 wk course......starting several weeks after surgery. My assessment is that the radiation resulted in a reduction of tearing in his r eye-temporarily resulting in corneal ulcers. He was also very tired. One thing that helped us during the presurgical wait and the period of radiation was the use of medition tapes put out by HEALTH JOURNEYS. They offered specific titles to help us maximize what we could do to get the most out of each step of the journey and to get us in the right frame of mind. Nan

Gratefull1
Posts: 1
Joined: Feb 2010

Hi, my husband was diagnosed in August 2009 with an esthesioneuroblastoma. He was not a candidate for surgery because the tumor was so large and encased both carotid arteries and optic nerves. He had 33 radiation treatments and 4 rounds of chemo. He was just told by his oncologist that more chemo will not shrink the tumor.
The neurosurgeon suggested MD Anderson and we are just starting to look into it. We have a HMO insurance and I doubt that they will pay for treatment there.
This is the only place I have seen that multiple survivors of this rare tumor can support each other.
Anything you would like to share is welcomed.

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

I went and still continue to go to MDAnderson. Diagnosed with Esthesio is May 2008. My dr was Dr. Hanna.

I was impressed with MDAnderson, am so blessed they accepted me. I did a self referral (you can go online and review) or you can have you dr refer you. The financial dept will review your insurance and what you are required to pay out of pocket. Up front, all I had to pay was the deductible for that year and made monthly payments on what was not covered. Once of the things I loved about the system was that all your dr's, appts, etc. are all billed through MDA and you dont get all these different bills from different offices.

Dont be afraid to go and find out what they will or will not cover. They have financial assistance, housing assistance and multiple programs they can discuss with you.

Good luck and keep up posted.

Sirena
sirenaf40@aol.com

mom2.4
Posts: 3
Joined: Apr 2010

This is my first introduction to this web site. I'm glad to have found it, especially since ENB is so rare. Each of the posts have been very encouraging.

My daughter was diagnosed in Oct. of 2007 with ENB (Kadish stage C), at the age of 13. She had tumor (4cm x 5cm) resection at Seattle Children's. She had clean margins except where the tumor had invaded the fatty tissue around the eye orbit. She then went for proton beam radiation at MD Anderson Proton Center (for 8 weeks). Two months after radiation ended she had her follow-up appt. and both the MRI and biopsy showed irregular cells, which the doctor's decided was either residual or recurrent ENB. She then underwent 4 rounds of chemo at Seattle Children's. Three different types of Chemo were used: carboplatin, ifosfamide, and etoposide. She has been cancer free since July 2008. We have had amazing doctor's through the Seattle Cancer Care Alliance. Her surgeons are both from Harborview in Seattle, and have done an amazing job at tumor removal and reconstruction.

For those of you who had resection followed by radiation, what stage was your cancer and did the surgeons get clean margins?

My daughter continues to have PT scans and MRI's every 3 months. Although at her last appt. the Oncologist said that she could move to every 4 months and do MRI's only, since she has been cancer free for nearly 2 years.

I would highly recommend Proton Beam radiation for anyone with ENB. It has very little splatter and a very low exit dose, therefore has fewer side effects than traditional photon radiation. My daughter did not lose any hair, nor sense of smell, and did not have negative salivary side effects.

I hope this is helpful. Everyone's comments have been helpful and encouraging to me. If I can be a help to anyone going through what we went through, I'd be more than happy to.

bennytoby
Posts: 2
Joined: May 2011

So sorry you are going through this with a child. I am 60 and just diagnosed after thinking it was a nasal polyp. Never would have suspected a cancerous tumor. I was told it was more common in children, but was most patients at UVA have been adults. I too was wondering what stage all the writers were in. I am lucky to have found mine early, and am in Stage A. The tumor is small compared to your daughter's (5mm x 15mm). Taking radiation treatments at UVA, to be followed by cranial resection. Its their protocol at UVA, and they think by doing radiation first the margins will be better.

Hope she is still cancer free -

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

hi, I'm not sure if I'm posting correctly so forgive me if I don't!

I was diagnosed on Friday. It's Sunday now. i have Esthesioneuroblastoma Hyams grade 2-3, big daft blobby shaped thing that's pushing my right eye out so I look like Kermit the frog and has pushed through the cribriform plate and currently believes it is the scaffolding rescue committee for my frontal lobes. it has also, rather rudely deposited it's little babies in my lumbar and my hip. I didn't think I was the cancer type, lol!

I'm 43 and have three BEE-YOO-TIFUL children and may I just say that this dull lump will not be taking me out. Ever. I will be dying, probably around 180 with my countless grandchildren, great grandchildren etc running around the garden. 

I am also, praise God under the care of Dr Hanna at MD Anderson. And just in case it's helpful, my treatment has been planned as firstly Induction Chemotherapy with Cisplatin and Etoposide, to try to shrink the tumour down, if it behaves and shrinks down to 50% then I will go another round of Chemo. If by that time the tumour and it's fetid offspring have not disappeared they will operate endoscopically and craniotolly if the tumour still thinks it has to hold my brain up...then chemo-proton radiation.

I feel like me and my Medical team are crack Marines or something, going in for a deep cover mission to blast the living daylights out of a calculated terrorist attempt to take over the mother country. I am MAD as h*ll. 

I thought I had developed an allergy because I'd recently emigrated to the States (I'm British), then when my eye starting bulging attractively I was sent for a scan thinking it was sinusitis.

I am so glad I found you all, and what I'm even more glad about is how positive and strong and happy you all are. Soooo grateful. I too know that this blip is eminently curable, I'll be squealing I'm FREE!!!!! by Christmas.

:) I'll keep you posted. Stay happy, cancer hates a happy life :)

 

Chuck2339
Posts: 10
Joined: Jun 2012

Unfortunately, welcome to the world of ENB. Scary stuff to say the least. I never thought I was the cancer type, either. I played softball, golf, tennis. Ate healthy, didn't smoke or drink. And yet ENB got me.  Anyway, the first round of treatment I received was also Chemo. Same combo of poison as yours. The Cisplatin nearly did me in so they changed it to Carboplatin and I tolerated that reasonably well. All my treatments were from Jan-Jul, 2009. I'm still here. Have hope. This one can be beaten.  Read these posts. You'll see there are a wide range of outcomes.

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