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Esthesioneuroblastoma Diagnosis

hutch2766
Posts: 1
Joined: Jan 2014

My name is Jeff and I was just diagnosed with Olfactory Neuroblastoma. I am very thankful that I found this board and can find out more about this cancer. The one thing I do know is that it is rare...very rare. I am in central NC and it seems there is a very limited niumber of physicians that can help. To add to my delimma....on 12/23/13 my son was diagnosed with Hodgkin's Lymphoma and has had two chemo treatments. Needless to say when I got my news late yesterday I was floored. Please....can anyone offer any information on the cancer, doctors, facilities, and treamments?

Jeff

KTeacher
Posts: 928
Joined: Jan 2011

Your plate is full.  Sounds like you are ready for the fight(s).  Welcome to our group, great group of survivor's.  I know someone will post soon that has more information about the type of cancer you battle and cancer centers in your area.  For now, know that prayers abound.

debbiejeanne's picture
debbiejeanne
Posts: 2400
Joined: Jan 2010

Jeff, I'm so very sorry for what you are facing and going thru.  It is hard enuf to battle for yourself but to also battle with/for a child is beyond imagination.  I'm not familiar with the cancers you list but want you to know I'm praying for you and your son.  i'm sure others who are familiar with your types of cancer will reply to  you.  please let us know how you and your son do.  Saying a prayer now.

God bless you, your son and your family,

dj

phrannie51's picture
phrannie51
Posts: 3691
Joined: Mar 2012

looking for us....but am so glad you found us.  There have been others here with Olfactory Neuroblastoma, tho I don't know if they are still using this forum.

One thing I'd do, since this is so rare....is start looking into big cancer centers reasonably close to you.  You may have to stay somewhere if they do radiation....but I know I'd want to be in a place where they've seen this before, and have treated it.  Maybe ask your Dr. for a list of centers within the state?

p

wmc's picture
wmc
Posts: 404
Joined: Jan 2014

Sorry to hear your news. I don't know about that cancer but you are on the right path to fight it. Do research and find out what you can. Google does help and then check cancer centers to find the best you can. I did and it really helped me with mine. Texas is rated #1 and Boston , John Hopkins, Etc.. I am in California so I went to Stanford #9 in ENT in the nation.  I'm am so glad I did. Try youtube, might sound silly but it helped me with what I have. Stay stroung, you will have bad days where you get real down but there is help and wonderful people here to listen to you. Some times it just helps that someone hears you, were here for that too. You and your son will be in my prayers. Stay stroung, you will win this fight.

Bill

 

CivilMatt's picture
CivilMatt
Posts: 2933
Joined: May 2012

Jeff,

I pulled up an earlier thread which might help you. 

Good luck and welcome to the H&N forum.

Matt

phrannie51's picture
phrannie51
Posts: 3691
Joined: Mar 2012

thread Matt pulled up in case it gets lost again before you come back:

http://csn.cancer.org/node/236539

TracyLynn72's picture
TracyLynn72
Posts: 685
Joined: May 2013

to hear all that you're dealing with right now.  I'd like to suggest Levine Cancer Institute in Charlotte, NC.  They are AMAZING and top notch with technology, information and the staff can't be beat.  At least look into them and see what they can do.  I'm in NC, too, and would have used them no matter where I lived. 

bjohn
Posts: 17
Joined: Oct 2011

Hello Jeff

My husband was diagnosed in spring of 2011 and still addressing issues with this cancer.  It is not common so ask a lot of questions. Also, different centers have different approaches,which is confusing( even major medical cemters ) Chemo or no chemo seems to be dependant on the center. There is also a link on the brain tumor board, some recent. There aren't a lot of studies on this cancer so I think finding someone who has had expereince with this is key. Good luck with everything.

olivia46
Posts: 27
Joined: Sep 2011

Hi Jeff:

I had ENB,operated and treated at HUP in Phili PA (Oct 2011-Feb 2012).  My doctor, Dr. Kennedy, was the one who invented transnasal  procedure while he was in Johns Hopkins Hospital.

The following two sites might be of your interest:

http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/brain_tumor/center/skull-base/types/olfactory-neuroblastoma.html

http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/brain_tumor/patient_information/

Wish you and family the best.

 

Olivia

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

Hi Jeff,

I am so sorry too. I had Esthesioneuroblastoma, in fact I am posting tonight that I just got my results yesterday and it is completely and absolutely gone from my body :)

I had very advanced esthesio, with two mets to my back and hip, which is even rarer than the cancer itself! 

 

I have tons of very positive experience to share with you , at least about the esthesio. Just ask away and I'll try to answer any questions, there are others who are survivors of this cancer on the forum.

Firstly, it is a very very treatable cancer, it seems mostly to respond to the treatments they use for it, and very quickly so chin up.

In terms of treatment centres I use MD Anderson, Dr Ehab Hanna as a surgeon, Dr Gold for chemo (AMAZING woman), and Dr Adam Garden for Radiation, a superstar. They are the best in the field and what was important for me was that they have direct experience of this rare cancer. They have cured it before. That was important to me.

 

My treatment was 3 rounds of induction chemotherapy; Cisplatin and Etoposide. The tumours were totally blasted after just three rounds! Then concurrent radiation and cisplatin for 33 rounds. I didn't have ANY surgery at all and the cancer is gone.

 

You're gonna be fine. Don't sweat it. Stay positive, that's crucial. Don't let it spook you. This cancer is so chemo-sensitive it HATES Csiplatin, and Cisplatin is a go-getter :)

 

Ask me everything...I'm right here :)

Best wishes

Hen65
Posts: 6
Joined: Mar 2012

Hi Jeff,

 

I havent visited the site for a while but just decided to pop in tonight and saw your post.

I was diagnosed with Olfactory Neuroblastoma in November 2011. Had 6 weeks of radiotherapy and 

6 cisplatin treatments. Finished treatment in March 2012. ITreatment and post treatment very tough but theres no

optiion but just be strong and get through it.

Good luck , and  if you need to know anything , Im here ( in UK !!)

 

Helen

 

 

 

Harleygirl123
Posts: 2
Joined: Oct 2012

Jeff,

I am a 1 1/2 year survivor.  I wish I would have seen your post sooner.  Go to Mayo in Rochester, MN. I underwent a crainialfascial resection and have scanned clean since July 2012.  How are you?

KP
Posts: 4
Joined: Sep 2013

Hi Jeff,

The three big ones are UVA Dr. Levine, Dr. Snyderman with University of Pitt, and Hopkins Dr. Gary Gallia. We go to Gallia but have seen Levine for a 2nd opinion and emailed back and forth with Snyderman. When you do the research on-line, these are the biggies that are doing research on ENB. Don't give up...fight hard.

Best,

Karla

  • Dr. Paul A. Levine
Department Of Otolaryngology – Head and Neck Surgery
University of Virginia
P.O. Box 800713
Charlottesville, VA  22908-0713
Phone: 434-924-5593
 
  • Carl H. Snyderman, MD
        Department of Otolaryngology
       University of Pittsburgh Medical Center
       Eye and Ear Institute
       200 Lothrop Street
       Pittsburgh, PA  15213
       Phone: 412-647-8186
       Fax: 412-647-2080
       Email: snydermanch@upmc.edu

Gary Gallia, MD PhD

Gary Louis Gallia, MD PhD
Assistant Professor of Neurosurgery and Oncology, Director of Endoscopic and Minimally Invasive Neurosurgery, Director of the Neurosurgery Skull Base Center
Assistant Professor of Neurological Surgery

See Research on Pubmed | See Research on Google Scholar

Male

Appointment Phone

410-614-0585

 

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

Hey Jeff, just want to let you know there are others out here w/ your diagnosis.  Would be really glad to answer any questions you have.  I have been treated at M. D. Anderson in Houston, TX w\ great results so far.  My doctors were Ehab Hanna and Adam Garden.  I also had neuro surgery  by Dr. DeFranco.  Please e-mail me w/any questions.  I had a great mentor to help me along the way and I would love to pay it forward!

Susan

debbiejeanne's picture
debbiejeanne
Posts: 2400
Joined: Jan 2010

Susan, Jeff hasn't been on since 1/30/14.  if i were you, i'd also send him a pm just to be sure he sees one or the other.  just a suggestion.

dj

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