Esthesioneuroblastoma

Chuck2339

paul22222 said:

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

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

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

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

Elliot16

Chuck2339 said:

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

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

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

Crusting
had my surgery on 11/22/02 ( coming up on my 10 year anniversary)...doing fine but I've adjusted to the fact that I will be irrigating for the rest of my life.....if I am outdoors during the day...often need to irrigate 3 times a day...but a relatively small price to pay....so other than the loss od smell and less than perfect taste ( from the radiation)....things are allright

dwr9b1

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.

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

benrhonda

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

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

marysueb

ENB Survivor - 5 1/2 Years
Wow. I got on this site a month before my husbands surgery, just after diagnosis, in March of 2007. I don't know what I did, but I never found ANY of you people. I'm glad to know that there are other survivors out there - though I'm sad for the unexpected sufferings you've had, too. I'm just amazed to find others now, and didn't even remember being on this site before today. I do know that I hunted Everywhere I could, and could only find a few places on the internet back then that even mentioned the word esthesioneuroblastoma.

Anyway, my husband was diagnosed in February of 07 at age 45. He'd been going to the dr's around here for nearly 15 months due to a blocked nostril. He was finally sent to a sinus doc who prescribed a bunch of different things and then an ENT who ordered the first MRI and sent him straight down to Emory in Atlanta without telling us what he saw.

So we found out it was cancer when they ordered the PET scan and we asked what it was for. The reply? "To rule out Other malignancies"

Oh.

My husband had a huge tumor, stage C or stage 4 or whatever the worst was - the only thing the dang thing had not done was metastasize at that point. It grew into the maxillary, sphenoid and ethmoid sinuses, through the cribiform plate and into his frontal lobe before it was found. My husband had no symptoms, worked until 2 days prior to surgery in April. Well, in retrospect, he had been having some headaches that he thought were due to "stress". And then he got some nose bleeds much later, just prior to diagnosis, that we thought were due to it being dry in the house over winter....

His surgery went very well in Atlanta, he did not want to go anywhere out of state and these people had just published some data on ENB in 2006, a 20 year study or something like that.

But 6 days after surgery, he had a stroke, the contracted pneumonia, MRSA, another staph infection, and ventriculitis. It was rough. He was in a coma for awhile, in hospital for 2 and 1/2 months (he thought he'd be home eating pizza after a week) and had to relearn to swallow, make a sound, walk, talk, etc.

But three months after surgery he was back playing the drums (though he was very weak).
He got negative margins around it all. Half of the surgery was done by the ENT, and half by the brain surgeon.

He relearned to walk and drive and then had radiation (something like 35 treatments) and it weakened him a lot and gave him a metallic taste in his mouth. (he did NOT lose his sense of taste, but the olfactory gland was GONE).

After radiation, he had chemo. Etoposide and Carboplatin. Two very nasty drugs. They took my weak husband and nearly did him in. Two treatments and the oncologist shook his head. No more, he said. It's making him too sick. My husband would get up to go to the bathroom or somewhere and just bam! fall on the floor. He's 6'4" and had been 275 prior to surgery, but came home weighing 215. He'd never smoked or anything, no one had cancer in his family, never was sick, worked so hard.....

But he's doing OK now. He went through a really rough time, but thankfully, he does not remember most of it. He's got some cognitive disability, plus aphasia, but is able to be a dad to our children (youngest is 12, she was 6 when her dad got sick), and is generally a happy, grateful man. His MRSA caused us to have more surgery, but we call it when his head was removed '08 (bone flap) and later was replaced in
09.

He did have a reoccurrence in August of 2011 - three small spots sitting on top of his dura. They were radiated with our hospitals' equivalent of the gamma knife deal. Two are gone, and the one that remains shrank and is not growing. This happened 4 and 1/2 years after surgery.

Now there is a small enhancement next to this last tumor, but they don't know if it's new growth or necrosis. He also had some seizures for the first time this summer. A grand mal on Father's Day this year. Now we have some good drugs for that and he's doing great.

I'd love to talk with others who are on this same journey. However long or short. And I'm so grateful to hear that there are other long term survivors!!! We were told 5 years ago that there was no data on anyone past 10 years....

God bless you all. Peace and healing,
MarySueB

billy boy

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

Rookie
Ben, your not the rookie anymore. I was diagnosed with ENB on September 6th from a biopsy. Was also diagnosed first on July 5 th as a nasal polyp many months later after a catscan, MRI done at Cape Cod Medical Center was sent to Boston Medical Center to Dr Anand Devaiah who did the biopsy and found the cancer. Had a pets scan done on 9/27/12 . My cancer is stage B/C. Will have craniofacial surgery 10/23/12. Dr Devaiah is one of the few surgeons to do this surgery. I am 83 years old in very good shape. Walk and play golf every day. Walk 3 miles. Will keep you all posted. Say a prayer for me and all others who have this very rare and tricky cancer.

Netracer61

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.

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

Chelseadawn

Gratefull1 said:

MD Anderson
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.

Hi my name is chelsea and i

Hi my name is chelsea and i am from british columbia in canada. My mom was diagnosed with this and is also unable to recieve surgery as it is to far into her brain, we just found out today. what ar we up for here i see your husband went through lot of radiation and it hasnt seemed to help things. I am very scared! So what the verdict none of the radiation or kemo has worked??

Andrew71

Chelseadawn said:

Hi my name is chelsea and i

Hi my name is chelsea and i am from british columbia in canada. My mom was diagnosed with this and is also unable to recieve surgery as it is to far into her brain, we just found out today. what ar we up for here i see your husband went through lot of radiation and it hasnt seemed to help things. I am very scared! So what the verdict none of the radiation or kemo has worked??

Read the post from lester537. He says chemo and raditation eliminated his tumor without any surgery. So it sounds like it can work very well for some.

paul22222

paul22222 said:

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

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

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

Update

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

Asmom905

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...

 

Redbow

robe68 said:

To KS
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.

Esthesioneuroblastoma

My recent PETScan which the radiologist labeled as "clear", came back w/ an area around my 1st costrochondral juntion and clavical region lit up.  He said it was most likely inflamation.  Now, seeing this, I am worried.  Could you e-mail me and we could converse on this?  My name is Susan and I was diagnosed in Nov. '12 as a stage A.  I would really appreciate any info!

Susan

My e-mail is to_tsu_hwa@yahoo.com 

CAROLANNVO

Esthesioneuroblastoma

I am surprised that there are still posts from 2007.  I was diagnosed in 2001 and heve been cancer free for 12 years.  I have always gone for the CAT scans of my head, neck and lungs but was released this year from that.  I am not comfortable with not checking, but I think that I will do it about every 2 or 3 years.  I do not know what the protocol is so I guess that I am just supposed to take my chances.  Any commemts are welcome.

Chuck2339

Elliot16 said:

Crusting
had my surgery on 11/22/02 ( coming up on my 10 year anniversary)...doing fine but I've adjusted to the fact that I will be irrigating for the rest of my life.....if I am outdoors during the day...often need to irrigate 3 times a day...but a relatively small price to pay....so other than the loss od smell and less than perfect taste ( from the radiation)....things are allright

Baby Shampoo and Peroxide

Actually, my docs at UVA told me to try these rinse treatments to see if crusting buildup could be slowed or stopped. The first was to mix 1/8 Tsp of baby shampoo in with 8 oz of saline and use that to rinse. The other one was to mix 2 oz of OTC peroxide with 6 oz of saline solution. I tried both over a period of several months and neither worked. The docs still have to remove the crusting every two month or so. I rinse twice a day. That, plus total loss of smell and taste, are the only side effects I have. I'm 63. Still go into work every day 

I had my ENB treatment in early 2009 and so far no recurrences.

DonnaMarie1

overalles said:

Esthesioneuroblastoma
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.

i was recently diagnosed. i had surgery to remove the tumor at the beginning of this month. The doctors were not able to remove all of it. They are suggesting another surgery then radiation for 6 weeks. I pesonally dont want to do radiation. I would like to hear everyone's experience who have not chosen radiation and/or chemo. Thanks

paul22222

CAROLANNVO said:

Esthesioneuroblastoma

I am surprised that there are still posts from 2007.  I was diagnosed in 2001 and heve been cancer free for 12 years.  I have always gone for the CAT scans of my head, neck and lungs but was released this year from that.  I am not comfortable with not checking, but I think that I will do it about every 2 or 3 years.  I do not know what the protocol is so I guess that I am just supposed to take my chances.  Any commemts are welcome.

Scans

I am only nine months out from surgery, however, my doctor doesn't recommend any routine scans.  They feel that a visual inspection is sufficient (I am still returning every 8-10 weeks for cleanins and followup).  I don't feel that great about the lack of scans.  I am curious to hear what others have experienced in the way of followup scans after the surgery.   I had everything done at UVA.

Chuck2339

paul22222 said:

Scans

I am only nine months out from surgery, however, my doctor doesn't recommend any routine scans.  They feel that a visual inspection is sufficient (I am still returning every 8-10 weeks for cleanins and followup).  I don't feel that great about the lack of scans.  I am curious to hear what others have experienced in the way of followup scans after the surgery.   I had everything done at UVA.

Scans

I also had all my treatments done at UVa.  The last was surgery in July 2009. Prior to that, I had several MRI's.  Since then none. I never really thought about it until now. I've always counted on (and trusted) the opinions of Dr. Levine. If he sees the need for follow up MRI's or scans, so be it. Typically, I have follow up examination and de-crusting work done every 2 months or so.

Chuck2339

DonnaMarie1 said:

i was recently diagnosed. i had surgery to remove the tumor at the beginning of this month. The doctors were not able to remove all of it. They are suggesting another surgery then radiation for 6 weeks. I pesonally dont want to do radiation. I would like to hear everyone's experience who have not chosen radiation and/or chemo. Thanks

I think the treatment protocals differ from facility to facility and from doctor to doctor. If you have a doc that you like and trust, let him lead you. At UVA the protocal for ENB seems to be chemo, followed by radiation, followed by surgery. They told me in the beginning that the chemo and radiation would not eliminate the tumor but would force it to encapsulate itself making removal easier and with much less blood loss. 

I don't blame you not wanting radiation. The side effects on me were tough.

They have antinauseals they can give you along with the chemo to make that bearable. Cisplatin is nasty! Carboplatin is a bit better. Hair loss is probable. I was fascinated to hear how chemo drugs work. They are designed to seek out and attack the fastest growing cells they find. Typically, thats the tumor. But then, when they have nothing better to do, they seek out other fast growing cells. Guess what that is?  Your hair.  Mine grew back just fine.

My ENB was diagnosed as Kadish C. That was back in early 2009. So far no recurrences.

Stay as fit as you can. It will speed up recovery.

Chuck2339

Amynicole0116 said:

I was diagnosed with ENB when I was 15
I am now 23 and so far, so good! I had a couple surgeries and radiation to get rid of it. Mine was the size of an acorn and apparently it was caught pretty early. Does anybody know if they're close to finding out what causes this? And what is the likelihood of it coming back?

Causes and Recurrences

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

jedsnearlythere

SIRENAF42 said:

MDAnderson Patient
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

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