Esthesioneuroblastoma

jedsnearlythere

Chuck2339 said:

My story dealing with ENB
- 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.

What was your incision site Chuck?

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

jedsnearlythere said:

Diagnosed two days ago....

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

 

Diagnosed two days ago

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.

Chuck2339

jedsnearlythere said:

What was your incision site Chuck?

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...

Incision site

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.

jedsnearlythere

lester537 said:

Seven Year Survivor
I was diagnosed with ENB in Feb 2003. Underwent chemo first under the care of Dr. Sillers at UAB in Birmingham, AL. My tumor had already gone past my cribiform plate into my brain cavity. Dr. Sillers elected not to do surgery since my cancer was in the late stages. I first underwent chemo. After only two weeks, the tumor was almost gone. I had another two chemo treatments over the next six weeks. By then the tumor was essentially gone. The doctors elected for me to have radiation treatment to make sure it was completely eliminated. I had 25 daily radiation sessions. After the radiation treatment, Dr. Sillers performed exploratory surgery to determine if any of the tumor remained and if my cribiform plate still had a hole in it. He found that everything had completely returned to normal.

I have had anosmia since the onset of the tumor in November 2002. I sometimes have "phantom smells" where I think I smell something then realize I can't. I can still remember what things smell like and often have dreams about being about to smell.

Otherwise, I have had no major issues whatsoever. I continue to rinse my nose with a saline/baking soda solution every day as the radiation causes "scaling" inside your nose for years after treatment.

seven year survivor

Just wanted to say thanks for this post. My tumour had also eaten through my cribriform plate and was pushing my frontal lobe up and was pushing my right eye out. I have had one round of cisplatin and three of etoposide all concurrently. And whilst I have to admit it made a the drug free natural childbirth of three 10 lb 3oz babies seem like a picnic; my eye has completely recessed to normal, I can now breathe fully through both nostrils I no longer have excess lachrymation or nasal discharge and my headaches have completely gone.

How cool is that? 

I'm due for my next round next Tuesday....bring it on...:)

 

jedsnearlythere

Asmom905 said:

Looking for info

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...

 

looking for info

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

woozylu

12nicky said:

2001
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

following up

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

woozylu

jedsnearlythere said:

Diagnosed two days ago....

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

 

This is the same time-frame

This is the same time-frame my husband was diagnosed...please post how you are doing...perhaps we can share war stories...he had surgery one week ago today!!!!  Sounds like we could be bunker-buddies...stay strong!  Sounds like you have a lot of people depending on you and hopefully helping you with love and support!

 

woozylu

jedsnearlythere said:

Diagnosed two days ago....

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

 

This is the same time-frame

This is the same time-frame my husband was diagnosed...please post how you are doing...perhaps we can share war stories...he had surgery one week ago today!!!!  Sounds like we could be bunker-buddies...stay strong!  Sounds like you have a lot of people depending on you and hopefully helping you with love and support!

 

Andrew71

 
 
 

 

 

 

KP

jimwatson723 said:

I've Survived Since Nov 2005
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.

Metastasis to Cervical Lymph Nodes

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

kpanciera

Just completed radiation

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

jnoelle77

kpanciera said:

Just completed radiation

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

sinus congestion

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

Did you have endoscopic resection or open surgical approach? 

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

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

 

 

 

 

kpanciera

jnoelle77 said:

sinus congestion

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

Did you have endoscopic resection or open surgical approach? 

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

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

 

 

 

 

 I had the endoscopic

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

 

KP

And Here We Go Again

Hello Fellow Members,

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

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

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

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

Karla

Tia Y

KP said:

And Here We Go Again

Hello Fellow Members,

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

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

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

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

Karla

prayers for the next phase of your lives...

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

KP

Tia Y said:

prayers for the next phase of your lives...

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

Thanks Tia

Hello Tia,

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

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

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

Karla

Chuck2339

Chuck2339 said:

My story dealing with ENB
- 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.

Coming up on 5 years cancer free

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.

Harleygirl123

benrhonda said:

esthesio
Hello all. I guess I'm the rookie now. Just diagnosed August 9, 2012, and had surgery Friday, August 31, at Memorial Hermann Hospital in Houston by Dr. Martin Citardi. Tumor was contained in the right sinus cavity under right eye. I will go back in on Tuesday for my follow up appointment and find out what happens next. Possibility of no radiation or chemotherapy, which sounds rare after reading of so many of your experiences. But I really have confidence in this doc. He is chairman of the ENT Department at the Univ. of Texas School of Medicine and is nationally known and respected. Anyway, the surgery was endoscopic and I'm feeling very blessed so far. Would like to communicate with some of you. I am 72, still very active, work part time and have a wonderfully supportive family and group of friends.

Ben

Newly diagnosed

Hi all...I was diagnosed on June 13, 2012...underwent cranial facial resection at Mayo clinic on July 16, 2012. I had stage II ...so far, cancer free. I will continue to scan every 6 months.

 

it's December 5, 2013....continuing scans every 6 months...scanned again on 11/12/13....still cancer free...thank god !! Praying for all of us every single day...

it's been 2 years !!  Still cancer free....still praying for all.

Rebeccaaa19

jedsnearlythere said:

What was your incision site Chuck?

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...

about the ENB

Sorry if my english is not good. It would be nice to know how you are doing now with the cancer. I was diagnosed this summer when i was 19.
I live in Europe, Finland. My treatment was free cause i am a student and in finland we have the social care system that pays all the medical bills if you dont have a job.
I had 2 surgery done first was 12 hours and other 4 hours. The cancer was not growing into my skull, but to my eye so they had to take away everything that was near of the eye. Thank god i still have my eye and its working! The cancer caused me vomiting and hyponatremia for two years i would like to know if im the only one who had these kind of issues.
Im wishing the best for you all, im praying for us

Rebecca-

San Francisco

Lucero said:

Side effects
Hi Sirena,

Hope you are still on this site. I'm quite surprised that it took me this long to find a support group for our disease. I was diagnosed in Nov. of 2002 and have been fortunate to not have a recurrence. After surgery I underwent six weeks of radiation. My question for you relates to the dryness in our nasal cavity. Today I struggle with this on a daily basis. My nose is so very dry from the radiation and it doesn't help that I live in the desert (Las Vegas). My nose basically never heals. I am constantly scabbing and bleeding. It's a recurring cycle. I scab due to the dryness which when removed weather naturally blowing my nose and/or by me because I cant breathe I start bleeding. Sometimes I will just bleed if I look down or strain myself in someway. After the bleeding stops, the nose scabs all over again. Have you experienced any of this? Unfortunately, nasal sprays don't cut it. My ENT says it's a normal side effect. I also can only smell on a rare occasion. My taste seems to be ok but varies slightly. I always feel so blessed when I can smell even for a split second

Thank you for taking the time to read this.

All the best,
Tina

las vegas radiation treatment

I saw your post and hope you can answer something for me.  I sent you an email, but I don't know how this works.  ANyways, I was wondering where you had your radiation treatment done.  Was it in Vegas.  My ENT sent me to San Francisco because this is so rare he didn't want me to experiment  here.  I thought radiation would be fine to do here, but after hearing the side effects, ect, and talking with the SF doctor, I don't want someone who has not had a lot of experience with this specific cancer radiating my head.  Where did you go?