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Esthesioneuroblastoma

Sarahss
Posts: 1
Joined: Jan 2013

Hi my name is Sarah and i recently saw a post for someone looking for help about information on survivors of Esthesioneuroblastoma. I have all the info you need ;)! According to Dr. Lin at mass eye and ear in Boston I am the longest living survivor where I received the Proton beam radiation to head and brain. I was diagnosed at 21 and am now almost 29! I was a grade 3-4 and the cancer stemmed from the dura in the brain to the bottom of my neck and worse surrounded and penetrated my left eye and orbit! I have a lot of health issues and plenty mental health issues that accompany my survival. I am not aware of any long term effects from the cranial facial resection, proton beam and photon beam radiation or even many if the effects from chemo. I suffer from PTSD, body dysmorphia and anxiety all occurring after my diagnoses. I keep telling the docs, all of them that something is wrong because I wake up everyday I'll, nauseous, tired, anxious, weak etc, and their reply is well there's no cancer! No crap, but there are plenty of other things wrong! Recently it was discovered that the proton beam radiation is thought to cause retinal bleeds in the eyes. Please watch out for this because blindness Will follow w/o treatment. My symptoms were dizziness, nausea and vommiting - but these are not usually cause for the doc to check the eyes!! I would like to talk to others w this rare cancer as I've only met one person in my life who was I'll w this. The journey still continues after diagnoses, although most docs fail to see the pain, mental and physical after treatment!! I would like to give my number to other survivors!!

longtermsurvivor's picture
longtermsurvivor
Posts: 1845
Joined: Mar 2010

Glad to see you here.  It has been a long hard road you have traveled.  Sometimes the choices we make are between the devil and the deep blue sea.  Such is the choice you were forced to make.  The treatments can be very difficult, and fraught with permanent disability; side effects that alter our lives permanently.   I have been through a lot of therapy myself, though my diagnosis difffers from yours, and am saddled with side effects that are likely permanent, though more of an inconvenience than a major problem.  there are a number of others who have posted here with your diagnosis, though no one who routinely posts here has exactly your history.  If you stick around for awhile you will find some of those people.  In the meantime, many of the rest of us are wrestling with problems caused by these difficult treatments, given for difficult disease.

 

Welcome again to the board.  Glad to have you here.

 

Pat

CivilMatt's picture
CivilMatt
Posts: 4154
Joined: May 2012

Hi Sarah,

 

Welcome to the H&N forum.  I am amazed at all you’ve gone through; it is simply astonishing what the doctors can do and how much our delicate bodies can take.  I on the other hand am just your “run of the mill” cancer patient and I share one side effect with you “tiredness”.  It some how seems trivial when I review your bio.  It sounds like your Dr. Lin is at the top of his game, so fortunately you are in good hands.

 

Again, welcome and like Pat said there are others who share your journey on this forum and hopefully they will speak up.

 

Best,

 

Matt

fisrpotpe's picture
fisrpotpe
Posts: 1349
Joined: Aug 2010

hi, welcome to an amazing support network of fighters and caregivers

i have sent you a private message, please check it out. 

so proud of you and how you have continued to fight.

keep fighting

john 

 

NJShore's picture
NJShore
Posts: 423
Joined: Nov 2012

Sorry we had to meet this way. I am one of the caretakers here, my husband is doing his best to recover from his radiation and chemo, his body took the treatments pretty hard. i am also a cancer survivor, but that is another board on CSN.

You certainly have travelled a tough road in your twenties! Well you are among friends here, a super group of friends/warriors/caretakers at all stages here.. Welcome, and hopefully you will find some comfort here.

oh, and did we tell you? We are all 29 too! ;) just a few more times then you've been.

feel free to vent, question, contribute, etc... You are among friends.

Kari

hai5965
Posts: 4
Joined: Oct 2010

I also have this cancer and have been fighting it the last 7 years. I was diagnosed at age 30 had craniotomy with tumor resection then full head radiation. went into a coma re learned how to walk and talk again. Speech issues. Had feeding tube. After 3 years It was found to have surrounded the meninges of my brain. Had chemo, and more radiation. i have seen specialists from Sloan Ketttering, Univ of Chicago, and have spoken to many over the phone. I have severe side effects, cant smell, cant taste, cant open my jaw but 1/2 inch. teeth are falling out of my mouth bits and pcs. I cant eat anything hot nothing cold. Nothing spicy. I get Thrush all the time. Cant drink water it burns my mouth. Im tired all the time. The doctors are at a stand still. In all the medical journals no one has EVER had this before. I am now on the 3rd drug to prevent seizures. The others I was all allergic too. Dont get me started on the headaches. They come when they want to,a nd they come fast and furious!! dizziness, nausea, extreme pain in the eyes, limbs. Mentally i am trying to survive everyday.

TLKO
Posts: 1
Joined: Sep 2013

helloI hello I'm Tabby....this is my first time on here...all my doctors want me to go see a 'professional' but I've had to almost all my lifrom or other issues I've had so it makes it ten times harder :/ I was diagnosed with esthesioneuroblastoma just after I turned 21 and that was 4.5 years ago. I do wish the doctors could help me because every time I wake up I never know what the day is going to be like?! I can't have any scheduled things because I never know if I will make it...I sometimes sleep til 6-7 pm for no reason!! Or I just don't sleep at all...I'm not so sure why I'm writing on here and how it's really supposed to go but I suppose I'm just trying to see if there is anyone else out there that has so many issues as I do??? At least once a month I have an infection in my face where the tumor was and once a month I have to go to the doc and have my face vacuumed out from all the built up stuff. I'm ALWAYS tired!!! ALWAYS!!! I can't seem to shake it :/ I even take adderall now just to stay awake but it doesn't always work either. I'm so sick of being sick all the time that its driving me crazy!!! I just turned 27 and yet I feel 77...also for the last year I've noticed that I can't remember things...anything! I can't remember growing up I can't remember movies I watched two weeks ago just nothing! I have to carry a red planner with me always because I have to write literally everything down. Now I've told my doctors something isn't right but I feel as tho they think I'm only crying wolf because I had cancer!!! What do I do then?? Can anyone tell me thing will get better????

Hondo's picture
Hondo
Posts: 6643
Joined: Apr 2009

 

First Welcome you are among friends who know where you are coming from. I have the same problem each morning I never know how I will wake up, good day / bad day just part of life now. I force myself to get up in the morning and get out of the house and to the office. My company has me set up to work at home if needed but when I do that I end up staying in bed. On good days I get out into the field running up the cost working on Oil field Dive boats, just something I always loved to do and I find that it takes my mind off my problems. You are very young still and I know you think what can I do, but try to find something you like to do. Then use it as a tool to motivate you and get out of the house. If you ever need to give me a call I can’t talk so good anymore but I keep trying. You will find my e-mail address on my post just click on my name Hondo.

 

God Bless

Hondo

KateB_Tallahassee
Posts: 6
Joined: Dec 2010

Hi Tabby;  you are so young.  I was 43 with I was sick, but I know it had been there for 2-3 years with headaches and nose bleeds, but dr was asleep at the switch apparently.  I can totally relate.  Yes, totally unpredictable schedule, some shame that I can no longer be counted on... and that can be isolating.  I withdrew from friends before I even knew I was doing it.  I guess just trying to be in "survival mode."  But that's not good enough is it.

I'm wondering how you are doing, since your message is from 2013 adn I'm glad you reached out.  that's healthy. Honestly, NO BODY, I mean NO BODY can understand this particular cancer.  I've been thru the shadow of death, and I want to kinda throw up a little when I hear all about people suffering with breast cancer or with a benign tumor, or who had a Polyp!!!.  Even though my good friend died of it... there's virtually no one to talk to about head and neck cancer that's.. a. still alive, and b. on a blog like this being honest, and c.  you have to hear from other's who've had a serious issue such as ENB.  You gotta have some bravery.  For me... I had none, but this overwhelming feeling of love and acceptance from Jesus Christ, who gave His life for me... and I express gratefulness today.  Even on the really crappy ones.  I'm just honest with Him.  God love you Tabby.  kb

Tia Y's picture
Tia Y
Posts: 4
Joined: Jul 2012

I read and get inspiration from these survivor stories. I hope mine can eventually help someone else because I plan to Beat Esthesio and be just like yall...a survivor...longterm!

I am a 54yr old female fighting my 3rd round of ENB tumors in a year. I was 1st dx'd 7-1-12 with Esthesio protruding at my forehead-Left side of nose& eye. ENB ate my nose bones,around my left eye & to my brain.       I had craniofacial resectn & removal of 2tumors & cut out my nose-inside & out 9-25-12, 9 rounds of chemo-cysplatin & Etopicide, & 41 radiation doses that ended 1st week Jan2013.

Just before my 6wk PET, i had 1,then 2, NEW Tumors pop up on the RIGHT side of my head-near my ear. They grew really fast! Biopsied & confirmed ENB 4-22-13 & surgery 4-29-13. This round i only got 3 weeks of chemo-Docetaxel & Irinotacan but the Dexamethazone steroid was just as bad as the chemo drugs themselves. 3 weeks is all my body could handle...i was too sick & counts were too low. And of course, 39 radiation doses...which has left me permanently bald in a large rectangle on my scalp.(that sucks big time!) My last trx was 7-26-13.

So...i am ALMOST at my 6weeks & PET time...so i can plan my reconstruction surgeries....NOPE...Nuh uh..No way!

I had a small knot appear at my right eyebrow-temple of the head a week ago. Then Labor Day Weekend, a large lump suddenly---i mean in less than 6 hours of checking for knots--appeared on my NECK-right side-under my ear. I have been having headaches again for several weeks and 3weeks ago-had a terrible ear-ache that didnt show anything upon Dr exam. But...my pains were something...just took a few days to surface.

Today is Friday 9-13-13. My biopsy results are in...Esthesio has decided to zap my body again. We know the head and lymph nodes are invaded. I will return to UAMS Little Rock next week for my ENT Oncology consult and probly have surgery the following week.

I dont know how much more of this i can handle. I am sure i will have to endure another series of chemo/radiation. I wonder which chemo drugs they will try this time. The side effects from the prev 2 series were AWFUL!!  

But my ticket seems to be pulled for a lonnngg rollercoaster ride and i am hanging on with a fierce grip guided by my faith and the Good Lord. 

I pray for each of you and get inspiration from your stories. Thank you for sharing and caring. Love & Blessings.

if anyone wants to follow my journey or see photos of the process...find me on Facebook :  Tia Yatsko   

phrannie51's picture
phrannie51
Posts: 4641
Joined: Mar 2012

you have been through the mill and back....and are preparing to do it again.  What tough lady you are!! 

I am sending you prayers and positive thoughts to get through this next battle with no more battles in your path. 

p

debbiejeanne's picture
debbiejeanne
Posts: 3095
Joined: Jan 2010

tia, i am so very sorry that u've had to battle so much!!  u have an outstanding atitude which will help u thru.  i will be praying for God to bless u w/the strength to fighthard and come out the other side of the tunnel.  we r all here cheering for you, just listen, u'll hear us, GO TIA! GO TIA!!!  God bless you.

dj

Tia Y's picture
Tia Y
Posts: 4
Joined: Jul 2012

Man, this esthesio really sucks! i couldnt even get 4weeks post surgery from slicin the neck open & head open & cheek open. bad enuf i am being told i must get new chemo & radiation in Little Rock...immediately.

Then NEW Tumors pop up....again. 2@Right temple & another large in Right lymph node.(all near prev surg sites). Sucker didnt even give me a chance to get zapped&fried this time.  But drs say no surgery this soon & only option is UAMS treating me & testing tumor cells in lab.

So my 3rd series of chemo started 10-28-13 with carboplatin & etopicide 3days every 3rd week. Dr is holding radiation to see what the tumors respond to with the chemo drugs. I got 2 days chemo,then got too sick/in hosp & missed 3rd dose. Still fighting the nausea today,even with continued doses of phenergan & zophran. Gearing up for round 2 this week. i have no clue what my body will do & i wont go into the various side effects or after-effects from the 9/23/13 surgeries right now, but it doesnt look too pleasant from my past experience.

Hopefully i will be able to update this in about 2weeks with some kind of better outlook after i question my new UAMS Little Rock med oncologist heavily. I must have been in a daze that first meeting & just couldnt function properly enuf to ask the needed juicy stuff & things happened fast this time. Well...i have my wits about me now...even if the wits are swimming in the nausea. So  i am armed to see chemo onc & ready to battle on. just keep my bucket close. its gonna be a bumpy ride.

phrannie51's picture
phrannie51
Posts: 4641
Joined: Mar 2012

trials on Facebook, Tia.....and I have to say again, what I said above.....You are on hell of a fighter!!  You kick that cancer's butt this time around.....we're rooting for you!!

Sending prayers, and tucking you into my pocket.

p

debbiejeanne's picture
debbiejeanne
Posts: 3095
Joined: Jan 2010

Tia, so sorry you are having such a rough time with the drugs.  I'm praying the side effects and sickness will subside and you can sail thru the remaining tx.  write down your questions as you think of them so you don't forget any.  its hard to remember everything when you're actually in the office.  Praying for the best and waiting to hear that it has gotten better.  keep us posted.

God bless you,

dj 

KateB_Tallahassee
Posts: 6
Joined: Dec 2010

Hello Again; I've been off of most sites for a very long time.  I MAY be the old lady of the crowd, but who knows.  I have lived many many years past expectations, so I decided to post a lot of my sorry = a that i can remember... did they mention the memory loss?

I was diagnosed in July 1999 with Stage 4, Kadash C ENB and told it was inoperable by 2 hospitals in Florida, so insurance said they would not pay for surgery.  That all worked out ok in the end, but let me get to medical and quality of life stuff.

I was NOT in a hurry to get treatment so I waited a bit and traveled, figuring I might not make it, and I wanted to enjoy a bit.  I had a 9 year old still at home.  

To make this succinct - I ended up with chemo, radiation, and craniofacial resection at the University of Virginia Charlotteville, which has been researching ENB extensively for 30+ years.  they did an AMAZING JOB.  I look "somewhat" normal.  People say they can't tell, though I can.  I have Titanium over half my forehead, entire right eye socket, and bridge of nose. Dr. Levin (head of the otolaryngology dept) did the lower surgery from nose up, and Dr. John Jane (worked on Christopher Reeves - SUPERMAN) approached from brain side.  

I got the chemo and radiation at home (radiation twice daily almost killed me), TAllahassee FL, which did not go well, because my Rad Oncologist said he followed the UVA protocol as agreed, but he did NOT.  I was one very sick cookie.  Lost 60 lbs.  Stomach tube within 2 mos of 3 mo treatment.

I had a LOT of people educating me about juicing, juicing for me, baking when I was finally able to eat with my mouth, etc.  I don't know if I would have chosen treatment if I'd known how barbaric it is... just being honest here.  I've been eating very clean, except for my Ginger Ale addiction.  I need the "fizz" to get my food down without saliva.  Makes it a LOT easier.  I eat lots of fruits, veggies, eggs, fish, not much meat, healthy carbs in limited amounts, and yes some sweets at at this point too.

The bad news was that 5 tumors, a recurrence of ENB appeared in my neck less than 4 years later.  "Metastatic" is a scary word, but NOT a death sentnace.  Start whole routine over in 2005, because AGAIN, I would not be rushed, as most doctors try to do.  They say I waited "too long" (what's TOO LONG???) for treatment, because by the time I let University of Florida, Shands Hospital go in there, the cancer has wrapped around to my spine, but not invaded it, and I had one extra tumor they had not seen, and he said the cancer was right down near the "lymph valve" opening that goes from the clavical area to the heart.

 My Dr., Dr. Vilaret (now practicing in North Carolina) was AMAZING, patient, helpful.  I didn't suffer a lot of the misery I had with first treatments, but that's because my wonderful Radiation Oncologist, Dr. Bill Mendenhall was sure to keep close watch and treated problematic issues that came up BEFORE I was much worse, and they made me much more comfortable.  Dr. V cut me from ear to ear.  Due to their vigilent efforts I did not need a stomach tube that time, but again, twice a day radiation almost killed me.

There's just nothing like having the upper part, then the lower part of your head removed - luckily at 2 different times.  

I am still alive.  I'd LOVE to know if anyone else has been thru this twice and lived.  I'm at 16 years!!  thank You Jesus for what you have done and directed others to do!  My husband died the end of May, 2015, so much learned about loss, hope, joy, peace.  I know one thing for absolute sure -  I will not live one day shorter or longer than God has planned, cuz He numbers my days, NOT DOCTORS!  And, I have never left I am doing the Father's work and pleasing Him as much as I do in my life now.  

Hoping this helps somebody.  Write more later.  There are many things I'd like to say about after effects, but too tired now.  God bless you all.

ronshope
Posts: 1
Joined: Dec 2016

Thanks for the hope. Sounds like you have been through SO much. My husband was recently diagnosed and had tumor removed from sinuses and just touching barrier to brain which needed reconstructed.  2 weeks and he is doing well.  The life expectancy in the studies (though scarce) are discouraging.  He was warned that this could be a long journey with reoccurance.  I'll be sure to share with him. He hates the computer so I get to communicate for him. 

I appreciate you sharing your experience.

 

CivilMatt's picture
CivilMatt
Posts: 4154
Joined: May 2012

KateB,

You have got my attention.  I once had the opportunity to handle pottery that was 1000 years old and I jumped at the chance.  Reading your brief bio I felt like opportunity was knocking again and I wasn’t about to miss my chance to congratulate (for lack of better words) you for your successes on this adventure.  I am sorry that you lost your husband and for a dozen other things you mentioned, but somehow you have persevered and I hope you have very few bad days moving forward.

Matt

Mona4's picture
Mona4
Posts: 3
Joined: Feb 2015

I'm glad to hear that there are some long term survivors out there.  I was diagnosed in 2015 and had 2 surgeries plus radiation.  Now I am 2 years out and all my scans are clear.  It's nice to hear that someone has beat this thing for 16 years.  

Olap
Posts: 2
Joined: Dec 2016

Hello,

I am so glad that I found this forum. I am 37 years old woman from Poland. I have esthesioneuroblastoma Hyams 3 and Kadish C. 3 years ago I had chemo: cisplatin, doxorubicin and cyclophosphamide treatment followed by radiotherapy. 6 monts break. The tumor has gone and after six months MR showed ENB again between my eyes. For 2 years I have been given many different chemo treatments. Doctors said that it is impossible to make radiotherapy twice and proton therapy after radiotherapy is also impossible. At this moment I am without therapy because in Poland there is no further treatment possible. I would be pleased if you could give me any information abot the place I can find any help. I don't have much time :( Did you heard about immunotherapy of this cancer maybe?

dmk66
Posts: 2
Joined: Oct 2014

Olap

I recently asked a neurooncologist and he said immunotherapy isn't availbale to our type of cancer. I wish it was. I am going to research more since immunotherapy is better than radiation and chemo

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