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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: 1800
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: 2959
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: 1338
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: 411
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: 5791
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

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: 3727
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: 2433
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: 3727
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: 2433
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 

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