Esthesioneuroblastoma Diagnosis

hutch2766
hutch2766 Member Posts: 1
in Head and Neck Cancer #1

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

«1

Comments

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #2
    Wow!

    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
    debbiejeanne Member Posts: 3,102 Member
    #3
    Jeff, I'm so very sorry for

    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
    phrannie51 Member Posts: 4,716
    #4
    I'm so sorry you had to find yourself

    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
    wmc Member Posts: 1,804
    #5
    Very sorry to hear..

    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
    CivilMatt Member Posts: 4,724 Member
    #6
    welcome

    Jeff,

    I pulled up an earlier thread which might help you. 

    Good luck and welcome to the H&N forum.

    Matt

  • phrannie51
    phrannie51 Member Posts: 4,716
    #7
    CivilMatt said:

    welcome

    Jeff,

    I pulled up an earlier thread which might help you. 

    Good luck and welcome to the H&N forum.

    Matt

    Here is the link to the

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

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

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #8
    I'm so sorry

    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
    bjohn Member Posts: 20
    #9
    Hello Jeff

    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
    olivia46 Member Posts: 28
    #10
    Some information

    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
    jedsnearlythere Member Posts: 9
    #11
    Esthesioneuroblastoma

    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
    Hen65 Member Posts: 6
    #12
    jedsnearlythere said:

    Esthesioneuroblastoma

    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

    Olfactory Neuroblastoma

    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
    Harleygirl123 Member Posts: 4
    #13
    Jeff,
    I am a 1 1/2 year

    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
    KP Member Posts: 6
    #14
    Big Research Centers for ENB

    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
    Redbow Member Posts: 5
    #15
    Esthesioneuroblastoma survivor

    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
    debbiejeanne Member Posts: 3,102 Member
    #16
    Redbow said:

    Esthesioneuroblastoma survivor

    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

    Susan, Jeff hasn't been on

    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

  • TammieC
    TammieC Member Posts: 6
    #17
    jedsnearlythere said:

    Esthesioneuroblastoma

    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

    My son diagnosed at age 19

    Dr Hanna will be overseeing his treatment for olfactory neuroblastoma.  His first appointment is Jan 13, 2015.  His tumor was removed Dec 2, 2014 and biopsy diagnosed him.  They went into the negative margins and feel that the whole tumor was removed, but PET scan lit up in the area of the tumor and small spots on both lungs.  Praying it hasn't mastated yet, strong family history of lung cancer.  He works a full time job and wants to continue working during the radiation.  His manager is not willing to work around drs appointments, which is why its taking so long to get the first visit.   Not sure how work is going to go during radiation.  Any advice you can give that would make this adventure easier on him?  Do you live in Houston or did you have to commute?  Houston is about 100 miles away from us.  Would you reccommend local radiaiton or drive back and forth to Houston? 

     

    So glad to hear things are going well for you!  Any long term effects that you are having to adjust to since radiation? 

    Thanks for being there for us newbies!

  • wmc
    wmc Member Posts: 1,804
    #18
    TammieC said:

    My son diagnosed at age 19

    Dr Hanna will be overseeing his treatment for olfactory neuroblastoma.  His first appointment is Jan 13, 2015.  His tumor was removed Dec 2, 2014 and biopsy diagnosed him.  They went into the negative margins and feel that the whole tumor was removed, but PET scan lit up in the area of the tumor and small spots on both lungs.  Praying it hasn't mastated yet, strong family history of lung cancer.  He works a full time job and wants to continue working during the radiation.  His manager is not willing to work around drs appointments, which is why its taking so long to get the first visit.   Not sure how work is going to go during radiation.  Any advice you can give that would make this adventure easier on him?  Do you live in Houston or did you have to commute?  Houston is about 100 miles away from us.  Would you reccommend local radiaiton or drive back and forth to Houston? 

     

    So glad to hear things are going well for you!  Any long term effects that you are having to adjust to since radiation? 

    Thanks for being there for us newbies!

    Please re-post as NEW POST

    You need to re-post as a NEW POST. I did it for you but you should as well so I can remove mine and you get the responce.  They dont respond to ones that are a year old very much 

    Bill

    POST NEW FORM TOPIC

  • Olap
    Olap Member Posts: 2
    #19
    Esthesioneuroblastoma - help needed

    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
    dmk66 Member Posts: 6
    #20
    Olap said:

    Esthesioneuroblastoma - help needed

    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?

    Hi Olap

    Hi Olap

    I asked a Neuro Onc about immunotherapy and he said it's not recommended for our type of cancer. I plan on asking other Dr's what they think.

    Are you eating healthy food to keep your ph levels high? Meaning, your body isn't acidic. I am using natural treatments as much as possible. Apricot seeds, soursop, cbd oil, etc. Email me if you want to chat more. 

    God Bless

  • Bug21
    Bug21 Member Posts: 2
    edited February 2021 #21
    wmc said:

    Very sorry to hear..

    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

     

    Curious about care at Stanford

    Hi, I was recently diagnosed with Olfactory Neuroblastoma and also, referred to Stanford. Would you be willing to talk to me about your care there? 

Discussion Boards