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Esthesioneuroblastoma

lborntrager
Posts: 1
Joined: Sep 2007

Anybody out there know of or have information on survivors of olfactory (esthesioneuroblastoma). I am a 2 year survivor and would like to communicate with anybody that has info. Thanks!

bennytoby
Posts: 2
Joined: May 2011

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

Hope she is still cancer free -

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

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

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

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

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

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

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

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

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

 

Chuck2339
Posts: 11
Joined: Jun 2012

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

woozylu's picture
woozylu
Posts: 3
Joined: Sep 2013

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's picture
woozylu
Posts: 3
Joined: Sep 2013

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!

 

Jlybn
Posts: 1
Joined: Jun 2011

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.

Chelseadawn
Posts: 1
Joined: Mar 2013

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
Posts: 2
Joined: Feb 2013

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.

Alison6971
Posts: 2
Joined: Oct 2009

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. :)

KS
Posts: 7
Joined: Jun 2010

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.

Lucero
Posts: 1
Joined: May 2012

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

CAROLANNVO
Posts: 4
Joined: Dec 2003

I was diagnosed in 2001 and was referred to M.D. Anderson Cancer Center in Houston, Texas. I have been cancer free for 11 years. I am now contemplating only going for the CAT scans every other year. I am like you. My nose is gross, but I think that is part of the reprocussions of the cancer. At least we are alive. I irrigate most every night and it is so gross. I do not think that the surgery area will ever heal. I have lost my sense of smell, taste, salivia gland production and ear wax (not too bad) but it is all a consequece of being alive. Whatever you do, continue to use the floride trays every night. I was very good for about 5 years and then I stopped. I am now having major problems with my teeth. I was told about all of this before surgery, but I became lazy and now I am paying the price. I hope that my post will help other people on the board. Feel free to contact me at amy time. I am now disabled from Multiple Sclerosis, but again it is just something else you deal with. Thanks for listening.

benrhonda
Posts: 1
Joined: Sep 2012

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

billy boy
Posts: 1
Joined: Oct 2012

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.

Harleygirl123
Posts: 2
Joined: Oct 2012

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.

San Francisco
Posts: 4
Joined: Jan 2015

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?

12nicky
Posts: 2
Joined: Jun 2012

hi my husband was told last year he had they got all out when he had his sugery. then they did radasion and chimo all mri came back clear they told tere is nothing there he need.s to go back in dec for a new mri they told us did not go anywhere and all looks good

Archie82
Posts: 1
Joined: Nov 2009

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.

SIRENAF42's picture
SIRENAF42
Posts: 203
Joined: Oct 2008

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.

dmpatt
Posts: 2
Joined: Dec 2009

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.

TBates
Posts: 2
Joined: Jan 2010

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

TBates
Posts: 2
Joined: Jan 2010

I have been cancer free for 7 years no major problems! My email address is nolaavg@yahoo.com

micah
Posts: 2
Joined: Jan 2010

hi,
my dad was diagnosed with esthesionueroblastoma in 1997...in his olfactory nerve..they had to remove his olfactory in the first operation in 97'....hes undergone about 5 or more operations since and chemo in between and radiation and proton...and herbal stuff too...still fighting till today

lester537
Posts: 3
Joined: Apr 2004

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.

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

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...:)

 

heyxt
Posts: 2
Joined: Apr 2010

A relative of mine was diagnosed with ENB in 1997 and went thru rad/chemo. It went into remission for a number of years but now it is back.
He has completed radiation and 5 sessions of Timador for chemo but the tumor is not responding so they want to discontinue the treatment.
He is being treated at Yale (CT) and they are unsure of how to proceed.
I am trying to help by trying to get any advice I can on any treatments / hospitals / doctors that might be able to help so I can pass that information onto him.

Any Advice?
Thanks!!
Christy Kelly

SIRENAF42's picture
SIRENAF42
Posts: 203
Joined: Oct 2008

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?

heyxt
Posts: 2
Joined: Apr 2010

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.

robe68
Posts: 14
Joined: May 2010

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!

norm49
Posts: 1
Joined: May 2010

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!

brian1145
Posts: 2
Joined: Apr 2010

Ive have just been diagnosed with this cancer on April 23, 2010 i have not been treated as of yet and i really don't know anything about this cancer. I live New Orleans and since Katrina not many Doctors are familiar with this type of cancer. I was told by my Ear nose and throat doctor. Well let begin like this, i went for sinus surgery and during the surgery my doctor found the tumor. It was sent to a pathologist and it was diagnosed as this type of cancer. Only a small portion of the tumor was removed for a biopsy. I am very concerned about this once my family and friends heard this is like i have been given a death sentence. I know they genuinely care, but all i can think about is beating this. I'm 47 years old and just not ready to give up. PLEASE HELP.

SIRENAF42's picture
SIRENAF42
Posts: 203
Joined: Oct 2008

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

overalles
Posts: 1
Joined: May 2010

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.

Dadasko
Posts: 2
Joined: May 2010

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.

robe68
Posts: 14
Joined: May 2010

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.

Dadasko
Posts: 2
Joined: May 2010

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

robe68
Posts: 14
Joined: May 2010

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.

KS
Posts: 7
Joined: Jun 2010

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.

robe68
Posts: 14
Joined: May 2010

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.

Redbow's picture
Redbow
Posts: 4
Joined: Dec 2012

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 

KS
Posts: 7
Joined: Jun 2010

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.

MKURANZ
Posts: 1
Joined: Aug 2010

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.

SIRENAF42's picture
SIRENAF42
Posts: 203
Joined: Oct 2008

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

robe68
Posts: 14
Joined: May 2010

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

DonnaMarie1
Posts: 1
Joined: Jun 2013

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

Chuck2339
Posts: 11
Joined: Jun 2012

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.

robe68
Posts: 14
Joined: May 2010

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.

robe68
Posts: 14
Joined: May 2010

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.

alarson
Posts: 1
Joined: Nov 2009

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!

robe68
Posts: 14
Joined: May 2010

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.

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