Esthesioneuroblastoma

lborntrager
lborntrager Member Posts: 1
edited March 2014 in Brain Cancer #1
Anybody out there know of or have information on survivors of olfactory (esthesioneuroblastoma). I am a 2 year survivor and would like to communicate with anybody that has info. Thanks!
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Comments

  • PBailey
    PBailey Member Posts: 16
    SIRENAF42 said:

    Esthesionueroblastoma
    I was diagnosed with Ethesio... in Jun 2008, underwent suregery to remove the tumor and then 6 weeks of radiation at MD Anderson in Houston TX. My last treatment was Oct 1 2008. My 30 day check up was in NOv and my drs were very pleased with the results. I go back in March for my next check up... I am sooo excited that I found someone else with my type cancer.. I cant wait to communicate with you.
    Sirena

    Esthesioneuroblastoma
    Hello, I was diagnosed in October 2008 with early stage esthesioneuroblastoma. I underwent Endoscopic surgery in Pittsburgh (UPMC) in Nov and have just completed post op radiation using the CyberKnife on Friday 3/6/09. I now will have follow-up MRI's & chest x-rays every 90 days for the next few years and annually after that. I had never heard of this cancer and finding treatment options can be somewhat hard since there is no real "expert" on this cancer. I feel blessed since this was caught early and the procedures I choose were with little side effects, short recovery times and excellent prognosis' on the horizon.
  • pinkbear
    pinkbear Member Posts: 4
    PBailey said:

    Esthesioneuroblastoma
    Hello, I was diagnosed in October 2008 with early stage esthesioneuroblastoma. I underwent Endoscopic surgery in Pittsburgh (UPMC) in Nov and have just completed post op radiation using the CyberKnife on Friday 3/6/09. I now will have follow-up MRI's & chest x-rays every 90 days for the next few years and annually after that. I had never heard of this cancer and finding treatment options can be somewhat hard since there is no real "expert" on this cancer. I feel blessed since this was caught early and the procedures I choose were with little side effects, short recovery times and excellent prognosis' on the horizon.

    Esthesioneuroblastoma
    Thank you for sharing your story. My husband was just diagnosed with an ENB, stage C, grade 1-2, which has gone into the cranial cavity. After our search and careful discernment, we have decided on UPMC as well. We share in the frustration that treatment options and data are uncertain due to its rarity. But hearing your story offers hope. We wish you well. If you have an words of insight for us, we would appreciate hearing from you. If anyone else has used UPMC, we would love to hear your experience.
  • PBailey
    PBailey Member Posts: 16
    pinkbear said:

    Esthesioneuroblastoma
    Thank you for sharing your story. My husband was just diagnosed with an ENB, stage C, grade 1-2, which has gone into the cranial cavity. After our search and careful discernment, we have decided on UPMC as well. We share in the frustration that treatment options and data are uncertain due to its rarity. But hearing your story offers hope. We wish you well. If you have an words of insight for us, we would appreciate hearing from you. If anyone else has used UPMC, we would love to hear your experience.

    UPMC
    Pinkbear,
    I traveled from Northern VA to PA and had my EEA surgery at UPMC Mercy, feel free to contact me if you need to chat. I had surgery in Nov 08, I have nothing but good things to say about the doctors there, who are you seeing?
    Cheers and blessings,
    Patti
  • pinkbear
    pinkbear Member Posts: 4
    PBailey said:

    UPMC
    Pinkbear,
    I traveled from Northern VA to PA and had my EEA surgery at UPMC Mercy, feel free to contact me if you need to chat. I had surgery in Nov 08, I have nothing but good things to say about the doctors there, who are you seeing?
    Cheers and blessings,
    Patti

    UPMC
    Patti,
    We just met several drs. today. Surgery is scheduled for a couple weeks from now. I would love to chat to see how things went for you. You can email me at [email protected] if you would like.
    Thanks for the posting.
  • edglenn
    edglenn Member Posts: 2
    PBailey said:

    Esthesioneuroblastoma
    Hello, I was diagnosed in October 2008 with early stage esthesioneuroblastoma. I underwent Endoscopic surgery in Pittsburgh (UPMC) in Nov and have just completed post op radiation using the CyberKnife on Friday 3/6/09. I now will have follow-up MRI's & chest x-rays every 90 days for the next few years and annually after that. I had never heard of this cancer and finding treatment options can be somewhat hard since there is no real "expert" on this cancer. I feel blessed since this was caught early and the procedures I choose were with little side effects, short recovery times and excellent prognosis' on the horizon.

    Options for Esthesioneuroblastoma
    Hi

    Mi name is Eduardo Glenn, form Costa Rica, with a Esthesioneuroblastma (orbit invasion, cribose plate erosion, complete blocking of the nose, fast growing tumor). I need an option for a endoscopic surgery or another approach, we don´t have the experiencie here in Costa Rica with this type of tumors. Do you know any other Center different as Pittsburgh? They have a cost basis of $180.000 for the procedure (Dr. Snyderman group). I know they are the best team for that but I need to pay myself for the procedure and this amount is impossible for us in Central America. I am trying to find another option more cheaper to save my life.

    Any help will be nice.

    Eduardo Glenn
  • PBJ Austin
    PBJ Austin Member Posts: 347
    edglenn said:

    Options for Esthesioneuroblastoma
    Hi

    Mi name is Eduardo Glenn, form Costa Rica, with a Esthesioneuroblastma (orbit invasion, cribose plate erosion, complete blocking of the nose, fast growing tumor). I need an option for a endoscopic surgery or another approach, we don´t have the experiencie here in Costa Rica with this type of tumors. Do you know any other Center different as Pittsburgh? They have a cost basis of $180.000 for the procedure (Dr. Snyderman group). I know they are the best team for that but I need to pay myself for the procedure and this amount is impossible for us in Central America. I am trying to find another option more cheaper to save my life.

    Any help will be nice.

    Eduardo Glenn

    MD Anderson maybe?
    Hi Eduardo, I don't know if this is any cheaper or not but MD Anderson in Houston is another highly rated cancer hospital in the US. I suggest you give them a call and explain your situation, I hope they can help. Wishing you the best.
  • theclassactman
    theclassactman Member Posts: 2
    edglenn said:

    Options for Esthesioneuroblastoma
    Hi

    Mi name is Eduardo Glenn, form Costa Rica, with a Esthesioneuroblastma (orbit invasion, cribose plate erosion, complete blocking of the nose, fast growing tumor). I need an option for a endoscopic surgery or another approach, we don´t have the experiencie here in Costa Rica with this type of tumors. Do you know any other Center different as Pittsburgh? They have a cost basis of $180.000 for the procedure (Dr. Snyderman group). I know they are the best team for that but I need to pay myself for the procedure and this amount is impossible for us in Central America. I am trying to find another option more cheaper to save my life.

    Any help will be nice.

    Eduardo Glenn

    Specialists
    I don't know what the cost would be, but I had my esthesionueroblastoma removed in April of 2007 at Rush University Medical Center in Chicago by Dr. Guy Petruzelli and Dr. Rich Byrne. Excellent hospital, excellent physicians
  • theclassactman
    theclassactman Member Posts: 2
    Esthesioneuroblastoma Survivors
    I'm a two year survivor of this cancer (my surgery was in April of 2007) I'm interested in knowing if any other survivors of this rare cancer were users of Zicam nasal spray prior to contracting the disease. I read last night that yesterday the FDA recommended that consumers stop using Zicam because it can cause damage to the olfactory nerve. The parent company of Zicam has already settled one law suit in 2006 filed by over 300 class action plaintiffs who lost their sense of smell after using Zicam. Doesn't seem like a leap of logic to me that a product that can cause that kind of damage could also cause cancer of the olfactory nerve.
  • SIRENAF42
    SIRENAF42 Member Posts: 202

    Esthesioneuroblastoma Survivors
    I'm a two year survivor of this cancer (my surgery was in April of 2007) I'm interested in knowing if any other survivors of this rare cancer were users of Zicam nasal spray prior to contracting the disease. I read last night that yesterday the FDA recommended that consumers stop using Zicam because it can cause damage to the olfactory nerve. The parent company of Zicam has already settled one law suit in 2006 filed by over 300 class action plaintiffs who lost their sense of smell after using Zicam. Doesn't seem like a leap of logic to me that a product that can cause that kind of damage could also cause cancer of the olfactory nerve.

    Zicam
    Never used Zicam, I too am a Esthesio survivor. I believe mine to be related to environmental, mainly wood dust.
  • pinkbear
    pinkbear Member Posts: 4
    edglenn said:

    Options for Esthesioneuroblastoma
    Hi

    Mi name is Eduardo Glenn, form Costa Rica, with a Esthesioneuroblastma (orbit invasion, cribose plate erosion, complete blocking of the nose, fast growing tumor). I need an option for a endoscopic surgery or another approach, we don´t have the experiencie here in Costa Rica with this type of tumors. Do you know any other Center different as Pittsburgh? They have a cost basis of $180.000 for the procedure (Dr. Snyderman group). I know they are the best team for that but I need to pay myself for the procedure and this amount is impossible for us in Central America. I am trying to find another option more cheaper to save my life.

    Any help will be nice.

    Eduardo Glenn

    endonasal surgery
    Eduardo, you might try googling endonasal approach to find other places who do this surgery. Although we had surgery with the Pittsburgh team of doctors, they travel the world teaching their technique to other doctors. I saw on-line there is a dr. at the university of north carolina who trained with the drs. in Pittsburgh who is now doing the surgery as well. It might also be done in Atlanta at Emory, and a place in California too. Hopefully it will come up when you google! Wishing you well on your journey!
  • pinkbear
    pinkbear Member Posts: 4

    Esthesioneuroblastoma Survivors
    I'm a two year survivor of this cancer (my surgery was in April of 2007) I'm interested in knowing if any other survivors of this rare cancer were users of Zicam nasal spray prior to contracting the disease. I read last night that yesterday the FDA recommended that consumers stop using Zicam because it can cause damage to the olfactory nerve. The parent company of Zicam has already settled one law suit in 2006 filed by over 300 class action plaintiffs who lost their sense of smell after using Zicam. Doesn't seem like a leap of logic to me that a product that can cause that kind of damage could also cause cancer of the olfactory nerve.

    nasal spray
    My husband had surgery at UPMC for ENB in April, 2009 and is undergoing proton radiation therapy now. Doctors asked him if he did a lot of wood working or used wood glues, which he did not. He also never used any nasal sprays prior to his diagnosis.
  • namaste
    namaste Member Posts: 11
    PBailey said:

    Esthesioneuroblastoma
    Hello, I was diagnosed in October 2008 with early stage esthesioneuroblastoma. I underwent Endoscopic surgery in Pittsburgh (UPMC) in Nov and have just completed post op radiation using the CyberKnife on Friday 3/6/09. I now will have follow-up MRI's & chest x-rays every 90 days for the next few years and annually after that. I had never heard of this cancer and finding treatment options can be somewhat hard since there is no real "expert" on this cancer. I feel blessed since this was caught early and the procedures I choose were with little side effects, short recovery times and excellent prognosis' on the horizon.

    experts
    We found experts for my husband at Memorial Sloan Kettering Cancer Center in New York City.
  • namaste
    namaste Member Posts: 11
    MY HUSBAND HAD
    MY HUSBAND HAD ESTHESIONEUROBLASTOMAECTOMY 8/06 AND DOING FINE--EVERY 6 MO MRI. 64 year old never sick a day in his life prior to diagnosis-never used nasal sprays.
  • jimwatson723
    jimwatson723 Member Posts: 1
    namaste said:

    MY HUSBAND HAD
    MY HUSBAND HAD ESTHESIONEUROBLASTOMAECTOMY 8/06 AND DOING FINE--EVERY 6 MO MRI. 64 year old never sick a day in his life prior to diagnosis-never used nasal sprays.

    I've Survived Since Nov 2005
    Wow. Just ran across this board today. I was first diagnosed in Nov 2005 after undergoing a "routine" sinus scraping to remove a chronic infection. After hitting a growth in the sinus cavity the ENT took the steps he deemed necessary to control the profuse bleeding. Testing of the tumor revealed Estesioneuroblastoma. For such an extremely rare cancer, I am surprised to find all these posts here today. Once identified (was misdiagnosed the first time) I had 6 weeks of radiation. Then, scans every 6 weeks, which dwindled to every 3 months, then every 6 months.

    In November 2008 I began having symptoms of a tingling and/or numb left arm. Long story short, tests revealed enlarged nodes in the left neck. When antibiotics failed to address the issue I went in for a neck dissection with Dr. Guy Pettruzelli at Rush University in Chicago. During the surgery he found that the tumor (identified as the same olfactory neuroblastoma) had broken through the nodes and had begun invading surrounding muscle tissue. After a minimal healing period I went in for another 6 weeks of radiation targeted around the neck and chest, which completed in May 2009.

    Now preparing for the regular scans, which begin again next month.
  • SIRENAF42
    SIRENAF42 Member Posts: 202

    I've Survived Since Nov 2005
    Wow. Just ran across this board today. I was first diagnosed in Nov 2005 after undergoing a "routine" sinus scraping to remove a chronic infection. After hitting a growth in the sinus cavity the ENT took the steps he deemed necessary to control the profuse bleeding. Testing of the tumor revealed Estesioneuroblastoma. For such an extremely rare cancer, I am surprised to find all these posts here today. Once identified (was misdiagnosed the first time) I had 6 weeks of radiation. Then, scans every 6 weeks, which dwindled to every 3 months, then every 6 months.

    In November 2008 I began having symptoms of a tingling and/or numb left arm. Long story short, tests revealed enlarged nodes in the left neck. When antibiotics failed to address the issue I went in for a neck dissection with Dr. Guy Pettruzelli at Rush University in Chicago. During the surgery he found that the tumor (identified as the same olfactory neuroblastoma) had broken through the nodes and had begun invading surrounding muscle tissue. After a minimal healing period I went in for another 6 weeks of radiation targeted around the neck and chest, which completed in May 2009.

    Now preparing for the regular scans, which begin again next month.

    JIMWASTSON723
    When I was first diagnosed in May 2008, finding someone with ENB was difficult. Since I completed my treatments I have met atleast 5 people. Most with the same issue, mis-diagnosed the first go around.

    I worry abour re-occurrence, but try not to think about it, but sometimes, its just hard. The people that I have met that are past the 2 year mark, have all had some sort of re-occurrence.... so the Olfactory NBlastoma had gone into your nodes and spread from there? Its just weird, and I know as a cancer patient we tend to link everything to cancer, but my left arm goes numb when I sleep, often...

    okay sirena... Get off the ledge.... breath LOL I guess when I see my doc this Thursday, I will mention it. Maybe its from being on this computer too much :)

    Please keep me posted on how you are doing. You can email me here or at [email protected]

    Sirena
  • namaste
    namaste Member Posts: 11
    HOPE
    My husband(esthesioneuroblastomaectomy 8/06) and I attended the WEEKEND OF HOPE for the first time this year....an annual event every May in Stowe,Vermont for cancer survivors. First time attendees and a guest attend free the first year. Workshops are abundant. As we joined in at the closing ceremony atop the mountains adjacent to the Trapp Family Lodge it was with great restraint that I did not break out into...THE HILLS ARE ALIVE WITH THE SOUND OF MUSIC AND SO ARE WE ! Cancer is part of our journey not our destination. NAN
  • SIRENAF42
    SIRENAF42 Member Posts: 202
    namaste said:

    HOPE
    My husband(esthesioneuroblastomaectomy 8/06) and I attended the WEEKEND OF HOPE for the first time this year....an annual event every May in Stowe,Vermont for cancer survivors. First time attendees and a guest attend free the first year. Workshops are abundant. As we joined in at the closing ceremony atop the mountains adjacent to the Trapp Family Lodge it was with great restraint that I did not break out into...THE HILLS ARE ALIVE WITH THE SOUND OF MUSIC AND SO ARE WE ! Cancer is part of our journey not our destination. NAN

    NAMASTE
    How beautiful that sounds..... you should have started singing, you may have lead a choir :)
  • namaste
    namaste Member Posts: 11
    HOPE
    hearing your kind words reminds me of a cool refreshing breeze on a sweltering day.....I thank you. I do hear your worry ..........NAN
  • namaste
    namaste Member Posts: 11
    My husband and I have been
    My husband and I have been taking Maitake Extract since his diagnosis 8/06. I know there are cancer centers in the US that are doing studies on this extract. Literature is available describing it's tumor inhibitory effect,immune system enhancement and the effect it has on hypertension. WWW.MAITAKE.COM
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