Cancer Survivors Network

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.

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.

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

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.

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

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.

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

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!

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

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

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?

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

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

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

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!

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.

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

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.

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...

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

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

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

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.

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

how is she now if you do not mind me asking

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.

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

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.

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

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

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

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

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.

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

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.

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 -

How is your husband now? Did MD Anderson help? My husband was diagnosed October 2010. His tumor also is very large and non-resectable. He has undergone 4 rounds of Chemo, 28 radiation treatments and 5 days of radio therapy. The tumor shrunk 25% with the Chemo, but no more with the radiation. We are in a holding pattern waiting to have PET/CT in July.

I don't know if this is a good thing or a bad thing...but I completely forgot about this little space on the internet. :/

Thank you to everyone who responded to my first post. :) My last day of radiation was on January 11th and basically...I can't complain THAT much. My sense of smell has come back (if it is less than before, I don't notice it) which is a wonderful thing. Between surgery and radiation I did have my four wisdom teeth pulled (one was in need of pulling, the others were removed as a precaution because of getting radiation) and I did experience thrush, tiredness and hair loss (the back of my head, but it has grown back)...but that is about it. I also had reduced saliva but I never lost it completely.

I do have a question for those of you who underwent radiation. I don't know if it was because of the gadolidium (MRI) dye (they now have me marked as being allergic to it), the radiation treatments, or just the fact that I am getting older. I know people think I am crazy, but I had a "change" that was almost overnight. Does anyone else have any all over body pains or stiffness? If you did...how long did it last...and does it go away? This is crazy. :( I KNOW I didn't move like this before all of this happened...and now...I can hear my knees crack (more of a grinding sound) when I move them...and I just feel "old" and I am only 39. I have mentioned it to my radiation oncologist but he doesn't really seem to say anything definitive.

My biggest thing now is having to get used to another doctor. My AWESOME doctor (ENT surgeon) is moving across the country and unfortunately for me, I can't follow him. I am devastated, but I am hoping that this is God's way of telling me I don't need him anymore. At my July appointment with him, they filmed the inside of my nose and I got to see it for the first time (since usually my head is tilted back with a 10-inch stick up it LOL). He pointed out my eye, brain, some artery...and then showed me the area where the tumor was removed. It was completely smooth and didn't look like anything had been done there. It was truly amazing.

Sirena...I think it was you who had metioned being able to breathe for the first time through your nose. I think that is HIGHLY underrated. Every night, as I am trying to fall asleep, I say a "thank you" for being able to breathe through my nose with my mouth shut. It's such a wonderful feeling. :) Oh...and if you want...you (and anyone else who wants to) can contact me at alisonhaney@hotmail.com. :)

I also finished my treatment in Jan. I have had a lots of pain in my arms and shoulders. I also got what is called frozen shoulder. I was unable to move my left arm very much without a lot of pain. The doc said that can happen. Four weeks of therapy and it got better. My neck has also swollen. Doc also said that was from the radiation. That might never go away. I had my entire olfactory glad removed so smell and taste are gone forever. I still have some dry mouth and am now having dry eyes. The radiation doc says I can get new symptons even after a year.(had very aggressive radiation)I am still unable to work because I get real tired mid way through the day. Finding a job is not going to be easy(who is going to hire a 58 year old cancer survior when healthy young people can't find a job). Hope this helps.

I was lucky to have had not many side effects. Mainly fatigue, I did have very little hair loss, My doctor told me about my eyesight that in a year or two I could develope catoracs but could have that fixed. The only disappointment was I did loose my sence of smell and most of my sence of taste and 5 years later it has'nt returned, but I still like to eat.

My sense of smell is on and off again. Sometimes I get a faint hint of something, and then---- its gone. I tell my friends its like trying to start an old car, you think for a second its gonna turn over... you get excited .... and then, its dead. My taste is still muted, but I do have some tasting ability. Its been 13 months since my last treatment and I have just accepted this is who I am.. The girl who can see the roses but cant smell them. The girl who will still lick the frosting bowl, but can only tell you its sweet and not what flavor it is. I will say, I do miss my 3:00 diet coke, cause I still cant tolerate carbonation ... I guess it beats the alternative. So I complain with humor and am grateful for what I do have.

Had my surgery in NY and radiation under Dr. Flickenger in 1998 and 1999. A very good guy, and held in high esteem by other docs. The effects of radiation depends a lot on the angles the treatments take. The techs and doctor should be able to tell you what might be effected. You will have fatigue. And the salivary glands can be compromised eventually, but there are sprays and gum for that. Just make sure you rest after treatments. Give yourself a break. Your job is to get well. Nothing else.

You'll do well. The treatments are so much better now.

Allison, The exact same thing happen to me. I had a sinus infection that didn't clear up with regular meds and I went to the ENT dortor who gave me stronger meds then when that cleared he said I had a polyp. When he went in to remove it, he found the cancer. At the time (2003) We swarched everywhere for information. I hope I have been of some help. I have been cancer free since Feb. 2003. No reaaurance or problems. I went throught the 6 weeks of treatment after surgery and my eyesight never changed and i now live my new normal life. The tiredness will get better. I did loos eyelashes, eyebrows, and mystash, never loss the beard. That will all grow back. I cannot smell anymore and I am from the New Orleans area and the spices of the food I will never be able to enjoy again. If I eat a oyster poyboy I'll remember what it tast like and it helps. Best of luck with your recovery. As far as teeth problems and dry mouth issues there are a few. I cannot get teeth pulled anymore

Woow, I hate to hear that it has come back. Being an ENB survivor myself, it does scare me to hear. Can or have they done a surgical removal of the Tumor itself?

He has had surgical removal in the past. This isn't in a spot that they want to do surgery on and there is more than 1 spot so they want to go the chemo route.
It's been difficult with the lack of information so I am trying to find out from other ENB patients as to what has worked for them so that when he meets with his new doctor on Friday he can discuss and talk about any options that he might have that they haven't tried yet.

I am a survivor of ENB dealing with a 2nd recurrence to lymph nodes under my clavicle.
Since ENB is so rare, there is no protocol or standard of care for it. My oncologist at the University of Iowa is suggesting for me a protocol for children's nueroblastoma -since they figure ENB is most closely related to neuroblastomas. Tell your relative to ask the doctor to research the Children's oncology group #ANBL0532. Any oncologist will know how to research under that number. It is basically 6 cycles of chemotherapy, stem cell transplant from your own body, perhaps surgery, another intense round of chemotherapy then reinsertion of frozen stem cells and followed by radiation. The treatment is expected to last a year. I am in the process of getting 2nd opinions so I'll keep anyone posted who replies to this. ANY thoughts or ideas out there would be appreciated!

My husband was just treated for enb at St. Francis hospital in Hartford, Ct. His Dr. was Seth Brown (now in Farmington, Ct). We are very thankful that his ent sent us to Dr. Brown. Dr. B. was trained for nasal removal of the tumor and I would think that he would be able to help you. My husband was 6 hours in surgery, 3 days in the hospital, and 7 weeks of radiation. He lost most of his eyebrows to radiation(they haven't grown back yet) and his last treatment was 11/09. He has also lost his sense of smell, and part of taste(if it has a strong taste he can taste it), but not his appetite! Has some memory loss, he forgets to put toothpaste on the toothbrush, and mustard on his sandwich. Glad to have found Dr. Brown and his team. And would recommend them to others. Don't give up hope till you have tried all avenues. Good Luck!

First, take a deep breath and dont even think of death or giving up. Cancer is a word, and all though scary, it can and has been beaten!!

I was told by my Head and Neck Oncologiest that Esthesionuerblastoma is a curable cancer. It is slow growing and when caught in time is usually treated with Radiation and/or chemo and/or surgery or a combination of all three.

Read my profile and you will see my history with how I was diagnosed and my treatments. I had surgery and radiation with no chemo. I have met people who had to do nothing but just the endoscopic surgery and others that were more advanced, had to have a more serious approach.

1 - If your ENT can not recommend someone locally that knows the treatment protocol, then he or she should refer you to a cancer hospital that does. I was treated at MD Anderson in Houston. Ask your dr for help in locating the perfect team of dr's who can treat you.

2 - Stay positive and tell your family to stay positive. Laughing and being strong is the best mental medicine for you right now. Take the time you need to accept your diagnosis and then deal with it positively.

Ask questions and share your fears with your doctor. Take someone with you to all your appointments so they can listen with and for you and ask questions as well.

Hang in there, keep us posted on how you are doing. If youd like you can email me at sirenaf40@aol.com. I will try and help as often as you need it.

Sirena

Take

Hello:

I just found this web site and could not figure out how to post so I am replying to your email, hope you do not mind.

1. I am currently a 54 year old male living in Kentucky.
2. I was diagnosed with a Esthesioneuroblastoma skull based tumor (grade 2) in August 2003.
3. I received surgery on 9/12/2003 at KU Medical Center in Kansas City Kansas.
4. Surgery went well, I refused radiation and chemotherapy, both of my parents died of cancer and I do not believe the radiation or chemotherapy was for me.
5. I had quarterly checkups until 2008, now I go back every six months.
6. I have had no reoccurrences, feel like I have been blessed.

Thanks for letting me tag your email.

We are from Warsaw, Poland.
My boyfriend (28yo) was recently diagnosed with Khadish C, Hyams grade III ENB.
He was operated 2.5 weeks ago and the tumor was removed with negative margins. It was a craniofacial resection using the Weber-Ferguson incision.
He is now planning the radiation therapy and it should start in around 2 weeks. Once radiation therapy is finished it will be followed by a chemo therapy due to high Hyams grade.

I read about this disease quite a lot and it seems it might be susceptible to the treatment with betulinic acid - derived from the bark of the silver birch.
Unfortunately there is no FDA accepted drug with it, but there is one in the late phase of tests for its HIV inhibiting properties. The drug is called bevirimat. The betulin and betulinic acid are a part of herbal extracts available on the market (in Poland it is sold as Betuleco). It is a supplement and apparently it can be used in conjunction with the orthodox therapy (like radiation). I am not going to write any more about it as it is not approved, but you can do some research on your own.

Generally this type of cancer is rare and has little literature. Though the therapy results show that in recent years the disease free survival as well as overall survival rates are getting better and better.

Your group is an example of that. Thank you very much for this forum.

I would suggest that you tell your radiation oncologist to make sure they radiate the lymph nodes on both sides of the neck as well. I know from experience having lived through a recurrence to that area with ENB. Also, have them do concurrent radiation and chemotherapy (cisplatin or carboplatin) to enhance the radiation.

You are right about the survival rates. I'm on my 2nd recurrence but I had a different treatment plan. I'm not without hope, however.

Thank you for the suggestion. Can you please tell me what was the treatment plan of the first therapy you had? Was it only surgery and radiation or maybe some other mix?
My friend will have radiation started next Monday and the doctor said that the chemo after this radiation is supposed to take care of any potential metastases. She also said that she would not do concurrent chemo and radiation due to the heavy toll that you need to pay for it.

Take care!
Adam

I had a fairly large tumor in the middle of my head so they did a craniofacial resection and then 33 brutal radiation treatments. There was no chemotherapy. Again, remember I had a recurrence to the lymph nodes in both sides of my neck. Since then, many hospitals have changed their protocol for treating initial ENB with radiation to the neck. I wish I would have known that before.

There are lots of ways to treat this but generally surgery and radiation is the standard of care for first ENB tumor. Concurrent chemo with radiation is used to enhance the effectiveness of radiation. I hope it goes well.

I found out about my ENB in July 2009 when I went in for sinus surgery. I got online and reserched it myself to find the best place to get the surgery to remove it. UPMC turned out to be the best. They did endoscoptic surgery. I was in for 10 hours. It had spread to my right eye and into my brain cavity. I also had several lymph nodes in my neck that were positive. The whole hospital stay was three days. I live in Mississippi so the less time I had to stay in Pittsburg the better. I received great care and my stay, under the circumstances, could not have more pleasent. When I got back home I went through three months of radiation treatments five days a week. I received my last treatment five months ago and so far cancer free. They removed my entire olfactory gland. Had I not acted when I did I am sure I would not be here to write this. I am still suffering with a lot of the effects of the radiation but see light at the end of the tunnel. I am alive and I will adapt. I did loose 70lbs. and look good.

I am sorry to hear of your initial diagnosis. It does seem like ENB likes to spread to the lymph nodes in the neck though I've also read about it metastasizing to the spinal fluid. You did great research. UPMC is also a top institution for dealing with this rare cancer in addition to MD Anderson, Mayo Clinic, U of Michigan. Most major cancer centers have a protocol for dealing with initial diagnosis. However, despite following the protocols (craniofacial resection, radiation the 1st time in '06; chemotherapy, bilateral neck dissection and radiation w/chemotherapy for the 2nd in '08).I'm now dealing with a 2nd recurrence (in '10) now to lymph nodes in the mediastynum - underneath, between my clavicles near aortic valve. For now the tumors are small and not growing rapidly. One doctor wants to do aggressive chemo and stem cell transplant. Mayo Clinic suggests wait and see and treat intermittently approach. I chose the latter approach I will do another PET scan in August and see what that brings. So, I understand what you are going through - nasal irrigations, neck stiffness, dry mouth, etc. Otherwise, I'm feeling just fine, a bit anxious but overall grateful. Working hard to keep myself in optimal condition.

I noticed some of the surviors saying they were form New Orleans. I would be intrested in knowing how many of us are from New Orleans.

My husband was dx Feb 2010 w/ENB: Kadish C, aggressive (mixed 2 and 3)...like all of you, a very long story. He has a long history of allergies...was getting more and more sinus infections and finally went to ENT who dx polyps. These were benign and all was well, a 'routine' CT scan showed a tumor about 3 cm in the olfactory area. This had eroded the skull base and was moving into the eye area(s). Anyhow, we didn't know what it was, because they couldn't safely biopsy it...he ended up having two major surgeries followed by proton radiation w/chemo. He recently finished all tx (July 2010). He grew up in cane fields outside of New Orleans, and has always struggled w/allergies. He was a healthy 40 yr old man w/nasty allergies, so we thought. Anyhow, we are taking it day by day and really, really trying to stay grounded. The thought of recurrence is in the back of both of our heads, but we really try not to go there. I think this site is a bit scary for us both, but we want to be part of the support and also be there for others!

We were scared, didn't have time to 'look' for MDs, since we didn't know what cancer he had...so progressed...we went with University of Florida's recommendation to be seen in St. Pete for surgery, Dr. Lanza (w/ENB experience) and Dr. Jobe (neurosurgeon) and returned to UF Proton center, Dr. Malyapa, and Dr. Guthrie, a professor, for chemo (where we live in Jacksonville, fl). He's recovering, and we are taking a day at a time for now.

Its a scary journey, but always stay positive. I was diagnosed in 08 and am almost 2 years clean. Everyones journey is different, but truly believe that if you stay positive, and allow yourself hope, happiness always follow.

Laugh at cancer, its the best medicine :)

Sirena

You are a lucky person, my friend. I too share your feelings about chemotherapy and radiation but the techniques ARE getting better, more safe.

Being positive for sure helps. But you must be vigilant and proactive. There is not a single expert out there on ENB so get your scans done regularly, monitor your body for lumps or abnormalities, eat and sleep well, lower stress, and get lots of opinions before embarking on a treatment plan.

Right away. I would suggest MD Anderson in Houston TX. It's not far from you. I have never been there but based on what I've heard from a 10 year miraculous survivor in Chicago, he said MD Anderson is one of the best. I am considering a consultation there myself.

Brian 1145,
My father was diagnosed with esthesioneuroblastoma the summer of 2004 at the age of 40. After doctoring for what was a supposed sinus infection and nasal polyp in Fargo, ND we recieved the news it was cancer. Fargo had not dealt with this kind before(at that point they were unable to diagnose the biopsy). We were referred to the Mayo Clinic in Rochester, MN. That summer he underwent surgery to remove the tumor (we were told it was about the size of a softball) followed by concurrent chemotherapy and radiation. He completed his chemo in Fargo that winter.

I am unable to express my gratitude for the doctors in Rochester as I am proud to report that as of last week his 6 year scans and check-ups were clear!

I encourage you to keep fighting, and my thoughts are with you!

I have had ENB since April 2006, had my 2nd recurrence last months now to lymph nodes in between clavicles, in the mediastynum. Three tumors are small at this point but have been confirmed by surgical biopsy to be ENB. One doctor suggests many rounds of high dose chemo with stem cell transplant (autologous, using my own stem cells) and radiation - following a protocol for pediatric neuroblastoma. Another doctor suggests waiting until next PET scan in a few months to see how disease has progressed before attempting anything. Three tumors are small at this point. Is it better to wait and see or go for the kill now while the "tumor burden" is low? The Mayo Clinic favors the wait and see and treat if necessary option. Has anyone heard of stem cell transplantation to be curative for ENB metastasis beyond original tumor in sinus area? Please share your thoughts.

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

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

alarson,

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

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

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!!

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.

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...

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.

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

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.

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.

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.

Web site acting up and repeating everything. Sorry

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

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

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

DEALING WITH THE BIG C - 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

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 :)

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.

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