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Olfactory Neuroblastoma

heidster1984
Posts: 1
Joined: Mar 2012

Hello, my name is Heidi. While I myself do not have cancer, my father was recently diagnosed with having an olfactory neuroblastoma last week. I would like to talk with anyone who either is a survivor or knows someone who has been diagnosed with this cancer. I'm daddy's little girl, and this diagnosis has been really difficult for me.

On February 4, 2012 he was rushed to the hospital because he wasn't acting like himself, and he kept falling down and couldn't pick himself back up. My dad is only 55, and that is not like himself at all. He had a CT scan and they found the tumor, which they say was the size of an orange. He then had a frontal craniotomy the next day, February 5, 2012. Surgery went well, and my dad did awsome with recovery. He was discharged from the hospital 5 days after surgery, which i thought was a little soon, but he has continued to do great. He has physical, occupational, and speech therapy twice a week, and is set to start radiation in the next week.

I just would like to talk with anyone who has been diagnosed with this cancer, or know someone who has. Anyone who has survival stories would be helpful. I'm really scared, and imagining life without my dad is unbearable.

Skiffin16's picture
Skiffin16
Posts: 8286
Joined: Sep 2009

I'm sure everything is overwhelming at the moment....

I just want to try and calm you a little and welcome you to the forum.

While I have no expreience with the type of cancer you describe. I did have STGIII SCC Tonsil Cancer, and I know I was just as anxious and scared as you.

The people here are awesom, and offer tons of knowledge and experience, thoughts, prayers and humor.

We do have a SuperThread that also offers tons of great info..compiled by a forum member Dawn (Sweetblood22 and he best buddy Nizzy), contributions from many of us.

SuperThread

Someone I'm sure will chime in to your specific questions regarding Olfactory Neuroblastoma.

Technology and facilities are excellent these days. We have a huge rate of success for many types of cancers, that at one time didn't provide such great success.

Again, welcome and know that you have many survivors in different stages of treatment and recovery, and many, many care givers as you.

Best,
John

dwr9b1
Posts: 4
Joined: Aug 2012

Hello. My name is Ray. I am posting to you as you seem to have the most posts. I am newly diagnosed with Olfactory Neuroblastoma and am scheduled for surgery on Aug 31st with followup radiation treatments (6 weeks, 30 treatments. Kinda wondering why there is so little I can find on this form of cancer. Also wondering if any of you folks have been exposed to wood dust or concrete dust or have worked at a home improvement store? Anyway, any words on what to expect in coming months would be appreciated. Thanks

olivia46
Posts: 27
Joined: Sep 2011

I was diagnosed with olfactory neuroblastoma stage II, had operation October 2011, and completed radiation treatment in late February 2012. I got a lot of support from this forum and would like to help others at my best. The whole process was not pleasant, however, it was manageable. I thought the radiation treatment was harder than the operation.
I had transnal surgery (the tumor removal went through your nasal cavity instead of cutting through your scalp),there was no outside wound. However, I lost sense of smell and taste, which might or might not come back after surgery or radiation treatment. Started to have some taste and sense of smell around X'mas 2011.
It was due to a bit slower wound healing that my IMRT (intensity modulated radiation therapy (supposed to give you less damage to the healty tissues)was started in January 2012.
Doctor warned me that radiation treatment would make you feel worse day after day not like after operation you felt better day by day. I kept daily treatment record to ask questions during weekly meet with doc took down answers. I found it was helpful for me as a patient and for doc too. Medications were provided for nausea and pain of throat (radiation was for sinus and neck) Aquaphor was used to moisturize skin in radiation area. A& D ointment was recommended to treat some sunburn like lesion on skin.
Ginger tea and Ginseng tea seem to help nausea relief, I did check with doc to take them.
My diet was almost completaely changed. Now the texture of food was the most important. I used blender to chop meat and vegetables. Mashed potato, congee, softly cooked noodles,fruit smoothies, ice creams, jellos and puddings were helpful.
I was instructed to do nasal irrigation with gentamycin twice a day after operation and continued until July. I'm still doing nasal irrigation but without antibiotiacs.
There are short term and long term side effects after radiation treatment, it depends on individuals. Recently I found Dr. Brook's site http://dribrook.blogspot.com/p/radiation-side-effects.html is helpful. He is a doc-turned throat cancer patient.
I can also be reached at olivia46ch@gmail.com.
Cancer treatment is a long journey, however, it is manageable and you become more appreciative of common daily life.
Wish you good luck.

Olivia

dlygoblue's picture
dlygoblue
Posts: 28
Joined: Mar 2012

Ray,
Olivia's posting is excellent. This is a long process, and not very fun. But you will manage, and make it through this. You don't find many sites, or much info on this disease because it is a rare, concentrated form of cancer. This group, though, is well-informed, and a wealth of good information because we have gone through this experience. Use this group to get answers and advice when you need it.
As for your treatment, make sure you have a team of caregivers (family and frineds), make a schedule of your appointments and medicines, and take your meds as scheduled (not just when you feel you need them). It will make a difference.
David

dwr9b1
Posts: 4
Joined: Aug 2012

David,
Thanks for sharing your experience and wisdom on this process. I am scheduled for surgery in the morning 8-31 @ 7 AM in Dallas. My surgeons (Dr. Batra and Dr.Barnett)appear to be straightforward about the procedures and what to expect. I have a stage III tumor on the right side and expecting about a week stay in the hospital, then 30 radiation treatments over 6 weeks. To say that I am somewhat apprehensive would be an understatement. I am thankful that I found this site and hopefully, I will be able to share my experience with others who contact this insidious disease. Thanks again for your candor and knowledge in understanding this road I am starting down. David, do you now, or have you ever worked at a home improvement store like Lowe's or Home Depot? I can't help wondering if repeated exposure to wood or concrete dust hasn't have some impact on my sinuses.
Ray

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

This is a rare tumor, as you know. Also called esthesioneuroblastoma, there are others who have been to the boards with this malignancy. There are a number of threads regarding this, usually posted as you have in the title, or the other term. You can find them if you scroll through the first handful of threads below this.

Others will eventually show up and post to this thread who have first hand experience, but it may take awhile because I don't think any of them post here every day. Sorry you have to be here. Tell your dad to continue the fight!

Pat

dlygoblue's picture
dlygoblue
Posts: 28
Joined: Mar 2012

Heidi,
My name is David and I'm brand new to this network. I was diagnosed in May 2011 with Olfactory Neuroblastoma. I had a 14 hour surgery in June, followed by 6 weeks of radiation and Chemo. I'm still going back to the doctor(s) every month for monitoring, follow-up inspections, PET scans, and MRI's. As you see for yourself, your dad is going through some dramatic physical changes becasue of all these procedures, and they're taking a toll on his body. He needs you to be strong as well, becuase he's fighting for you. My 2 daughters and son will attest to that. I'll be happy to talk to you more about this if you'd like. And my 18-yr old daughter can share her insight with you as well.

chrismarler4
Posts: 3
Joined: May 2012

Chris Marler here.

I read your thread. Today I was diagnosed with stage 2 Olfactory Neuroblastoma (stage 2 pending MRI on the 30th). I know its rare and not a lot of info on the net. I see that you had surgery but at what stage was your cancer that prompted a 14hr surgery? I am soooo scared of surgery. I read about IMRT; is this something you tried? Maybe it wasn't available in 2011.

Does anyone know anyone that has used the IMRT?

Thanks,
Chris

phrannie51's picture
phrannie51
Posts: 4516
Joined: Mar 2012

Welcome to the board, tho I'm sorry we're meeting under these circumstances.

IMRT stands for intensity-modulated radiation therapy, and is the type of radiation most of us have had for our head and neck cancers. I believe it zaps the cancer while doing less damange to good tissue...and that is why it is preferred for HNC.

p

Skiffin16's picture
Skiffin16
Posts: 8286
Joined: Sep 2009

IMRT has been around for quite awhile... Actually I think they are enhacing it, and using other methods of delivery as well.

I was STGIII SCC HPV+ Tonsils and a lymphnode, Dx January 2009, finished Tx Jun 2009...all clear to date.

As P51 mentioned, many here that had radiation had IMRT... Some of the newer survivors, have had updated methods of radiation treatment if I remember that correctly.

Anyways, don't fear it, or try not...just understand it, and realize that treatment is your best shot of a long eventful life..."After Cancer".

Here's a link to the SuperThread, tons of very useful information... I believe it also has a section on IMRT and Radiation in general;

SUPERTHREAD

A thread started and compiled by Sweetblood22 (Dawn), consisting of many great links, posts, recommendations, and communications from many of the survivors here.

Best,
John

olivia46
Posts: 27
Joined: Sep 2011

Hi Chris:

I was diagnosed with stage II olfactory neuroblastoma last August. Had surgery October 2011 and completed radiation treatment late Feb 2012. I just responded to Ray, that might partially answer your quesstion.

Wish you the beset.

olivia

Dpack
Posts: 1
Joined: Jul 2012

Hello David,

I broke a front tooth in April of this year and had a CT scan. My first dentist said I needed an implant so I went for a second opinion. The second dentist found a large mass in my sinus. After surgery through an ENT and a three week waiting period, the results came back as an olfactory neuroblastoma. I have gone through a second surgery and am now waiting to start 6 weeks of chemo and radiation to my sinus area as well as neck (doctor called it elective radiation to ensure). Needless to say I am scared of the "unknown" and wondered if you could give me some idea of what you went through and whether this was the same treatments you. Many thanks,

Dwight

dlygoblue's picture
dlygoblue
Posts: 28
Joined: Mar 2012

Hi Dwight,
I'm happy to help. First, what you've been through, and what you will go through, is not easy. But don't be scared. This is a terrible illness, but a treaable illness. The treatment just scuks (pardon my French). After biopsies and confirmation I had cancer, I had a 14-hr surgery to retract an extensive cancerous tumor, and then a neck discection to remove a few lymph nodes (this is normal). Then 6 weeks of radiation and chemo (Cisplatin). Had to have a feeding tube put in after radiation treatments becuase they burned my throat so bad that I couldn't eat. Ask your doctor about this, and any other types of comfort medications he can give you (Miracle Mouth Wash, pain patch, hydrocodone, cream for your neck, etc.). I'll be very frank, you're goning to go through hell, but you can do it. Keep a schedule and take your meds as directed, especailly pain meds. Get yourself a network of caregivers. The more support you have, the better. I'm hapy to offer additional advice or detailed info as you need. I'm saying a prayer for you now.
David

olivia46
Posts: 27
Joined: Sep 2011

Hi Heidi:

I just replied to Ray, hope that is useful to you too. I can also be reached at olivia46ch@gmail.com.

Olivia

DougNTexas's picture
DougNTexas
Posts: 15
Joined: Jan 2013

Last week I had surgery to remove a polyp that had my sinus blocked. They told me today it was cancerous. I go back in wednesday. Looks like I am starting down this road. Glad I found this place.

phrannie51's picture
phrannie51
Posts: 4516
Joined: Mar 2012

If you start a new thread, I think you'll get more responses....this one is kind of old.

Sorry you are having to join this club nobody wants to belong to.

p

DougNTexas's picture
DougNTexas
Posts: 15
Joined: Jan 2013

How do I add Ya'll as friends?

Skiffin16's picture
Skiffin16
Posts: 8286
Joined: Sep 2009

Again, like Phrannie says, sorry you're here, but welcome and we'll try to help you with information as best we can... Many awesome people here and tons of experience.

The first thread on this forum is the SuperThread..it has tons of info compiled and put to a post by many here on this forum.

Also, like Phrannie said.., if you start a new thread, you'll get tons of support.

Best ~ John

DougNTexas's picture
DougNTexas
Posts: 15
Joined: Jan 2013

Gives me an idea what I am facing. Right now I have a good idea what to talk to the Dr. about Wednesday from reading here.

Redbow's picture
Redbow
Posts: 5
Joined: Dec 2012

Hello DougNTexas,

I, too, was just recently diagnosed w/ Stage A, lowgrade Esthesioneuroblastoma.  I found out in Nov. when I had surgery to remove a sinus polyp...After surgery, I had a follow up w/ a radiation oncologist who wanted to treat me w/ a 6 weeks course of radiation but my PETScan came up clean for the surgical site and w/ no metasteses.  That was in Dec.  So, for now, I am in a holding pattern (trying to get my insurance to approve a trip to M.D. Anderson in Houston, where they have experience w/ this rare cancer) but am hitting a brick wall.  From what I understand, so far, if you are in the earlier stages of this cancer, you will have an eaiser treatment...maybe only surgery...but, this cancer has a high rate of return, so usually they recommend surgery and radiation.  Chemo is usually reserved for later staged cancer that has envaded areas that are hard to reach w/ surgery.  I have worked in dusty enviornments for many years...I have horses here in West Texas and have worked in woodcrafters enviornments (although not for extended periods of time).  This cancer requires long term follow up.

Hope all is going well for you...

SusanTX

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

susan, this thread is old so u may want to start a new one.  some may overlook it since it's so old. 

God bless,

debbiejeanne

desi7290
Posts: 1
Joined: Feb 2013

Dear All,

My husband was diagnosed with Stage II Olfactory Neuroblastoma in November.  The doctors said that it was in very early stages and localized to the top part of the sinus.  He was operated in December and it was removed through the nostril, he had to lie flat for 2 days but considering all he was back to normal after a week.  He lost his sense of smell and taste and altough the doctor said that i should not have effected his senses and it should return he still has not gotten it back.  He has done a neck ultrasound soon after and it was clear and now he did a kidney test, another CT Scan and various blood tests, we should have the results of those this week.  In the third week of Februrary he will start his chemo/radiation treatment with one dose of chemo at the beginning of the week and radiation for the rest for a total of six weeks.  Then it will be a serious of routine checks to ensure it wont come back.  I am doing my best to support him through all of this as in the country where we live this treatment is not possible so we had to fly away from home to come for treatment.  its not easy being away from everyone for both of us but we are hoping for the best.  We are both in our mid thirties so all this came as a very big shock to us and took a toll on both our lives.  I found this site today and it helps to hear that you have gone through this and can now look back at it all. 

 

CivilMatt's picture
CivilMatt
Posts: 3883
Joined: May 2012

hope jeff sees this

petrovicd
Posts: 3
Joined: Feb 2015

Please, if anyone sees this, I've opened a new thread about Esthesioneuroblastoma/Olfactory Neuroblastoma. Please check it out. I a in dire need of help and advice. Thnk you, and best to you all.

norcalsierra
Posts: 1
Joined: Sep 2016

Hi Heidi,

 

I just got home from a dr.s appt. with my mom and she was diagnosed with olfactory neuroblastoma. I am so scared!!!! I have been googling it and i came accross your post. I am definitely with you I am a major mommas girl!!! I am so scared! I am so sorry you had to go through this aswell and was wondering if you could give me any info/answers??

much appreciated

Sierra

CivilMatt's picture
CivilMatt
Posts: 3883
Joined: May 2012

Sierra,

Welcome to the H&N forum, sorry about Mom, but chances are they will take care of it.  Treatment is tough, but very doable (we all did it),

This is an older thread and some of the members (above) do not come on as often.  To get a wider audience and some good response your best bet is to start a new thread and introduce yourself.

You also might look over the superthread for good info.

Matt

Rochester1950
Posts: 5
Joined: Sep 2016

Hi - just found this blog.  I was diagnosed last December after a routine polyp surgery.  Have gone through 5 weeks of radiation and now have monthly endoscopies with either my oncologist or ENT.  Have lost sense of smell/taste and wondering if anyone has experienced the same and regained the senses.  If so, how long did it take?  Just looking for some encouragement.  Thank you.  Sheila

CivilMatt's picture
CivilMatt
Posts: 3883
Joined: May 2012

Shelia,

Welcome to the H&N forum, I am glad you are on the mend.

As I mentioned above, this is an older thread and may not generate any response.  Your best bet is to start a new thread.

Matt

Rochester1950
Posts: 5
Joined: Sep 2016

Thanks for the suggestion, Matt - I opened a new thread and got response.  Stay well!

ckwhitehead
Posts: 1
Joined: Oct 2016

Im newly diagnosed with olfactory neuroblastoma and am considering surgery only.  Any experience with this?  im not interested in the radiation side effects.  also can someone instruct me on how to open a "new thread"  thanks,  i appreciate any comments/thoughts    cindy w

CivilMatt's picture
CivilMatt
Posts: 3883
Joined: May 2012

ckwhitehead,

Welcome to the H&N forum, sorry that you are here.

There are others on here with neuroblastoma and they can answer better than I can.

I think they often treat with chemo and rads because of the difficulty in surgery, but if they made you an offer so be it.

At the top of page there is NEW FORUM TOPIC, this is where you start a new page.  You might get more attention if  you start fresh these older threads while nice do not generate the interest.

Matt

 

MGE 1111
Posts: 2
Joined: Dec 2016

I suggest you contact MD ANderson in Houston.

I recommend Dr Ehab Hanna and Dr Raza.    I had ENB Kadish C, Stage 2-3 Hyman Scale.   I had a fist sized tumor between my eyes that finally blocked my right nasal cavity before I went to an ENT to get it diagnosed after a CT scan.

I live in Oregon and was diagnosed on Jan 6 2016.   Had surgery on March 3 this year and I recommend you get radiation to the site of the tumor after surgery.   In my case they recommended also preventative radiation of the upper half of my neck.     It was nothing as bad as they say in the training class which basically gives you all the worst case scenarios.  I did lose 30 pounds but needed to anyway...I am 185 punds now.   I started 30 days of radiation in April and stayed in Houston for that.    Got home June 1 started to work full time a week after that.    No doubt it kicks your butt for awhile with no energy and some dry mouth and no taste that they say returns but has not yet.  From the radiation they saved hitting my two large saliva glands by my cheeks and I lost function of the two small ones located under my chin.    I have quite a regiment of mouth cleaning and flouride trays and nose rinsing and cleanout of crusting in the nose, but I like the cancer free result.     All of this gets better and more normal as time goes on.

I fly back every 3 months since then and get MRI scanned.    Have also had 3 PET scans this year making sure it has not left the initial site.   Presently cancer free as of just before Thanksgiving Day when we got back from Houston.    So dont beleive all you read about life expectancy...etc.    Everyones genes are different and procedures are improving and radiation targeting is much much better than even just a few eyars ago.    Alot of those articles you read takes years of study and added lengthy approval for reading.     Its old news by then even it it says published in 2015.

My case was a major surgery.    They did it all through my nose endoscopically.    They did cut me ear to ear over my head to pull down the skin and get the paracranial flap and some layers of muscle called Fascia Latta from my leg that replaced a 2x2 piece of my skull base, the cribiform plate I think they call it.  They also  removed all my ethmoid sinus and most of my cartilage inside by nose but saved the nose shape and I have no facial scaring and the head scar is in my hairline and you cannot see it either.    They also removed bone from both my eyes....the sides on either side of nsoe and they fileld it back in with the leg muscle I mentioned.    I am now bionic!   :)     Not worth $6 million yet....but maybe some day.

They removed both my olfactory bulbs and the tumor had invaded the cranial cavity but not brain tissue, it has half way through an area of my Dura which is the skin that wraps the brain.

I had a small complication with a small cranial fluid leak the day I was to be released on my last check that kept me in the hospital for 7 extra days but it healed itself without further surgery.   They proabably removed the lumbar drain too early before they found the leak on my last check.   The had to put it back in.....now that sucked and was painful!    Get that done while they put you under!     But it was far better than another surgery.   The lumbar drain keeps your cranial fluid pressure down in the brain so the paracranial flap they install to replace the skull base piece has time to set and seal since it has to be air and water tight.   It replaces what used to be bone between your sinus and brain.     The tumor was close to my right optic nerve and my eye sight is good and I see the eye doctor every few months to compare against a baseline.    The radiation hit my brain frontal lobe pretty good and also near my right eye.    But no major long term impact is expected....maybe some short term executive function and short term memory, but has not been bad at all.    Yes....all radiation increases the chance of other cancers starting but dont forget.......you already have cancer and you must do everything possible to kill it.    Don't mess around and take chances.   If ENB gets south of the neck its a more complex problem.   But I beleive in prayer and I had alot of that going on with my family.    Trust in God as He is the one in charge no matter what decisions we make.      Have faith, but I know its scary as heck.      Especially before surgery.     You will be fine but you will have a year of crap for sure.   No way around that now.   It does get better ever day!    Let me know if you need more information or contact information.

Take care and God bless.    You are going to survive this!   Dont give up!

Mark

 

 

 

 

 

 

    

 

 

  

 

 

MGE 1111
Posts: 2
Joined: Dec 2016

Dr Garden is awesome, very caring and he is sharp.   His assistant Gary is funnier than hell and very supportive during the radiation process.    All the technical staff is very supportive and keeps your spirits up.

I did photon radiation.   Proton is the latst cool thing but our research showed no significant advantage statistically for my type of cancer.    Proton has issues with scatter in large areas of air space like sinuses.     The radiation treatment requires a mask and mouth piece they make for your head and neck and mouth to hold you still during the treatment.    The mask is attached to the table so you cannot move druig the 15 minutes once a day for 30 days.   There is no pain.    The first 2 weeks you feel no impact.   Week 3 it hits and you get real tired and sore throat and dry mouth.    Peek of misery is about week 8 from time of start and it starts getting better every day from there.    Some days are pretty tired.   You have to eat though.    Make sure you get what they recommend for protein and calories in you and drink ALOT of water!      I used alot of facial cream every day and some redness from radiation but no severe burning.  

Radiation beats you up but if you follow what they tell you recover fast!     Do what they say even though you dont have the energy and feel like heck.   Trust me it gets better much faster if you do.  

 

 

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