Esthesioneuroblastoma

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  • Amynicole0116
    Amynicole0116 Member Posts: 2
    SIRENAF42 said:

    ENB Survivor
    I asked my doctor what causes this type rare cancer, he told me that it was nothing I did (smoking..etc) but that he believed it to be environmental. I have talked or met atleast 5 - 8 people with our form of cancer and out of the 8 - 5 of us all had either worked in an environment that did wood work or did the hobby at home. I asked my dr, and he said that wood dust is a know carcinogen (spelling)... I still work in a cabinet mfg company, my office is as far away from the plant as possible :)

    The others, we had nothing really in common.

    Wow...
    Do you know if a real wood burning stove in a small house would be considered as possibly causing it? We had just moved to a new house and my dad was obsessed with that thing...
  • lettielulu
    lettielulu Member Posts: 2
    bennytoby said:

    New ENB patient
    Am responding to this comment as it is the most recent entry. If there's anyone out there who would like to share their experiences, that'd be great. Was glad to find this communication network as I hear we are a rare breed of cancer patients. How or why we got it no one knows. Anyway, I wanted to share my story. I am a healthy, 60 year old, female. I also went to an ENT for nasal polyps, discovered during a routine trip to my family doctor. He tried to remove the "polyp" only getting part of it. When the pathology report showed ENB we were all shocked. He referred me to several terrific doctors at University of Virginia. Luckily we live close by. Am currently having 25 radiation treatments, to be followed by cranial resection which I am not excited about. It was good to read your story and would love to know if there's any more current stories out there. Oh, did anyone have any side effects, and what did you do?

    Will update as time goes on. Hope all goes well.

    Undergoing ENB treatment
    My husband (67 yrs. old) has had 6 chemo treatments and will finish his 26 radiation treatments on this next Wed. Oct 26. His surgery will probably come sometime in the next month or so.

    Am anxious to know how your surgery went.

    He is being treated at Duke University Medical Center in Durham NC and we can't say enough about the entire staff here. In the beginning they consulted with UVA to determine the type of cancer he had and they concurred it was ENB. He has worked in his home workshop since his retirement in 1994 and the Drs. believe it is 'wood related'.

    Am anxious to know how your surgery went and how your life is going just a few months after the end of your treatments.

    Thank you, please e-mail us at [email protected]
  • TracyR1966
    TracyR1966 Member Posts: 1
    Hello. My son Thomas was
    Hello. My son Thomas was diagnosed with Esthesioneuroblastoma in December of 2009 when he was 16. He was first misdiagnosed with juvenile angofibroses. During the surgery to remove the grapefruit size tumor, they found out it was cancerous. We were very blessed to have a doctor who didn't even work at the hospital we were at, overhear the other doctors discussing my sons case. He told us NOT to do chemotherapy, as it does not work on this type of cancer. He recommended 7 weeks of proton radiation therapy in Jacksonville. With a chemotherapy "kicker" to boost the radiation. For 7 weeks, twice daily he underwent proton. It was not a easy journey for us as I'm sure you know. He's survived 12 hour surgery as well as many, many shorter surgeries.
    Today, he is still cancer free! Thank God and Dr. Lanza
  • JPelar
    JPelar Member Posts: 2

    Hello. My son Thomas was
    Hello. My son Thomas was diagnosed with Esthesioneuroblastoma in December of 2009 when he was 16. He was first misdiagnosed with juvenile angofibroses. During the surgery to remove the grapefruit size tumor, they found out it was cancerous. We were very blessed to have a doctor who didn't even work at the hospital we were at, overhear the other doctors discussing my sons case. He told us NOT to do chemotherapy, as it does not work on this type of cancer. He recommended 7 weeks of proton radiation therapy in Jacksonville. With a chemotherapy "kicker" to boost the radiation. For 7 weeks, twice daily he underwent proton. It was not a easy journey for us as I'm sure you know. He's survived 12 hour surgery as well as many, many shorter surgeries.
    Today, he is still cancer free! Thank God and Dr. Lanza

    I wrote a book about my Esther
    Yes, I call my estesioneuroblastoma Esther. Diagnosed in 2010. Three surgeries (including one to remove Esther, one to remove neck lymph nodes, and a third to remove a feared metastasis in my lung which turned out to be negative), plus 30 shots of radiation therapy to my head, all at Johns Hopkins Hospital. All clean now thank goodness. I decided to try to make lemonade out of lemons, and so I wrote of the highs and lows in a book called "Coping with the Big C - Compassion." It's available at Amazon.com and gives a good idea of what each of you are facing, or perhaps what some of you went through. Plus, it's kind of funny because I use humor to get through stressful situations. Hope you like it, and hope it helps.
  • kian
    kian Member Posts: 2
    High Grade Metastatic Esthesioneuroblastoma
    I also have a child who who has been treated twice for ENB. Both occasions he had surgery followed by radiation, the 2nd treatment was the neck lymph nodes. This time around, 1 1/2 years since diagnosis, the cancer has spread to his chest lymph nodes. He is now waiting for his chemo **** radiation. His tumor is the grade 4 type, supposed to be very aggressive.

    Does anyone have a similar experience, a grade 3 or 4 that has pread to share. thank you
  • MrBill1962
    MrBill1962 Member Posts: 1
    under treatment
    Hi, I've recently been diagnosed with esthesioneuroblastoma. It went misdiagnosed as a bad sinus infection for a month before someone wised up and did a CT which came back abnormal. Following this I had a Biopsy and then a PET scan to discover how badly it had spread. Thankfully though large, it is contained in my sinus and nose cavity on my left side only.

    I've completed my first round of chemo (3 types) and start my next round on 11/15/11. I met with my surgeon today and was informed that surgery is the final solution no matter how successful the chemo is. Following that, radiation.

    I'll likely lose my sense if smell and taste as well. Not very excited about that but reading the responses here, it seems to vary wildly with each person. Maybe I'll get lucky :/

    I welcome any responses.
  • KS
    KS Member Posts: 7

    under treatment
    Hi, I've recently been diagnosed with esthesioneuroblastoma. It went misdiagnosed as a bad sinus infection for a month before someone wised up and did a CT which came back abnormal. Following this I had a Biopsy and then a PET scan to discover how badly it had spread. Thankfully though large, it is contained in my sinus and nose cavity on my left side only.

    I've completed my first round of chemo (3 types) and start my next round on 11/15/11. I met with my surgeon today and was informed that surgery is the final solution no matter how successful the chemo is. Following that, radiation.

    I'll likely lose my sense if smell and taste as well. Not very excited about that but reading the responses here, it seems to vary wildly with each person. Maybe I'll get lucky :/

    I welcome any responses.

    Been There
    Seek out the docs at UPMC. I had found mine late as well. It was already into my right eye and lymph nodes in my neck. My doc told me only solution was cranial surgery and radiation. That is when I did my own research and found UPMC. Had endoscopic surgery there. Was in and out of the hospital in three days and only a scar on my neck. Followed with four months of radiation, which was the worse part, back at a local hospital. I am at the 2 year mark and no reoccurance. I am, however, having side effects from the radiation. Small price to pay for being alive. Have come to grips with never being able to smell ever again. I have very little taste. Most people do not know that 90% of taste is through smell. Contact me if you have questions. [email protected]
  • tesa
    tesa Member Posts: 123
    KS said:

    Been There
    Seek out the docs at UPMC. I had found mine late as well. It was already into my right eye and lymph nodes in my neck. My doc told me only solution was cranial surgery and radiation. That is when I did my own research and found UPMC. Had endoscopic surgery there. Was in and out of the hospital in three days and only a scar on my neck. Followed with four months of radiation, which was the worse part, back at a local hospital. I am at the 2 year mark and no reoccurance. I am, however, having side effects from the radiation. Small price to pay for being alive. Have come to grips with never being able to smell ever again. I have very little taste. Most people do not know that 90% of taste is through smell. Contact me if you have questions. [email protected]

    KS,
    Did they have to remove

    KS,

    Did they have to remove your eye? Who was your doctor at UPMC? Also how are they able to do four months of radiation? I thought the standard was always 6 or 7 weeks.
    My mother has paranasal, which is similar to ESB.
  • kian
    kian Member Posts: 2
    robe68 said:

    To alarson and Brian and others
    I have had ENB since April 2006, had my 2nd recurrence last months now to lymph nodes in between clavicles, in the mediastynum. Three tumors are small at this point but have been confirmed by surgical biopsy to be ENB. One doctor suggests many rounds of high dose chemo with stem cell transplant (autologous, using my own stem cells) and radiation - following a protocol for pediatric neuroblastoma. Another doctor suggests waiting until next PET scan in a few months to see how disease has progressed before attempting anything. Three tumors are small at this point. Is it better to wait and see or go for the kill now while the "tumor burden" is low? The Mayo Clinic favors the wait and see and treat if necessary option. Has anyone heard of stem cell transplantation to be curative for ENB metastasis beyond original tumor in sinus area? Please share your thoughts.

    To robe 68
    My son also recently had a 2nd recurrence to 2 lymph nodes in the chest. He was treated with surgery and radiation for the first 2 tumours. The present tumours are also small but his doctors in London decided on chemoradiation. He just had his first cycle of etoposide and cisplatin. Next appointment is 28 Nov

    We are praying ever harder that God will give him an outright cure this time around. All the best to you too. Will be pleased to hear about your doctor's next course of action.
  • KS
    KS Member Posts: 7
    tesa said:

    KS,
    Did they have to remove

    KS,

    Did they have to remove your eye? Who was your doctor at UPMC? Also how are they able to do four months of radiation? I thought the standard was always 6 or 7 weeks.
    My mother has paranasal, which is similar to ESB.

    KS
    No, they were able to remove the cancer.They did remove the ofactory gland. Dr. Snyderman and Dr. Gardner. Snyderman was the surgen. They told me that they had to be agressive with the radiation. I had a break at Thanksgiving and Christmas for about 4 days each time.
  • KS
    KS Member Posts: 7
    tesa said:

    KS,
    Did they have to remove

    KS,

    Did they have to remove your eye? Who was your doctor at UPMC? Also how are they able to do four months of radiation? I thought the standard was always 6 or 7 weeks.
    My mother has paranasal, which is similar to ESB.

    KS
    No, they were able to remove the cancer.They did remove the ofactory gland. Dr. Snyderman and Dr. Gardner. Snyderman was the surgen. They told me that they had to be agressive with the radiation. I had a break at Thanksgiving and Christmas for about 4 days each time.
  • KS
    KS Member Posts: 7
    tesa said:

    KS,
    Did they have to remove

    KS,

    Did they have to remove your eye? Who was your doctor at UPMC? Also how are they able to do four months of radiation? I thought the standard was always 6 or 7 weeks.
    My mother has paranasal, which is similar to ESB.

    KS
    Web site acting up and repeating everything. Sorry
  • JPelar
    JPelar Member Posts: 2

    under treatment
    Hi, I've recently been diagnosed with esthesioneuroblastoma. It went misdiagnosed as a bad sinus infection for a month before someone wised up and did a CT which came back abnormal. Following this I had a Biopsy and then a PET scan to discover how badly it had spread. Thankfully though large, it is contained in my sinus and nose cavity on my left side only.

    I've completed my first round of chemo (3 types) and start my next round on 11/15/11. I met with my surgeon today and was informed that surgery is the final solution no matter how successful the chemo is. Following that, radiation.

    I'll likely lose my sense if smell and taste as well. Not very excited about that but reading the responses here, it seems to vary wildly with each person. Maybe I'll get lucky :/

    I welcome any responses.

    Mr. Bill, I'm wondering why you are going through chemo in advance of surgery... I had no chemo at all. In fact, I'm told that there is no clear cut chemo plan for Esther (what I call my esthesio tumor). For me, they just took it all out (tennis ball size) through my nose, and then I had 6 weeks of radiation three months later. Yours sounds very similar to mine. You should seriously read my book (Dealing with the Big C: Compassion). Save for you having chemo, your situation sounds remarkably similar to mine. Maybe the book will help you to see what's coming, and you'll be better prepared. Plus it's funny; I use humor to get through all stressful situations in my life, including Esther. Meanwhile, my sense of taste is actually fine now; back to what it was before surgery. I'm convinced my tumor was growing slowly for a very long time, and my sense of smell was pretty lousy as a result, and my sense of taste adjusted a long time ago. So, losing smell completely as a result of the surgery wasn't really much of a drop off.

    Good luck.

    Jack Pelar
  • SIRENAF42
    SIRENAF42 Member Posts: 202

    under treatment
    Hi, I've recently been diagnosed with esthesioneuroblastoma. It went misdiagnosed as a bad sinus infection for a month before someone wised up and did a CT which came back abnormal. Following this I had a Biopsy and then a PET scan to discover how badly it had spread. Thankfully though large, it is contained in my sinus and nose cavity on my left side only.

    I've completed my first round of chemo (3 types) and start my next round on 11/15/11. I met with my surgeon today and was informed that surgery is the final solution no matter how successful the chemo is. Following that, radiation.

    I'll likely lose my sense if smell and taste as well. Not very excited about that but reading the responses here, it seems to vary wildly with each person. Maybe I'll get lucky :/

    I welcome any responses.

    Treatment
    Has your Esthesio spread to the bone? Is this why they are wanting Chemo. I had Estheso and underwent two endoscopic sinus surgeries to remove the tumor from the Ethmoid sinus, right maxilary sinus and nasopharnyx and then several months later - 6 weeks IMRT radiation. I am now 3 years cancer free.

    I lose my sense of smell on days when I have allergies or any stuffiness, and my taste is better, but I just dont like the things I used to. Other than that, all I deal with is the side effects from radiation (dry mouth, thyroid issues, brain fog, forgetfullness, chronic dry eye, just to name a few) but better than the alternative :)
  • veronica12
    veronica12 Member Posts: 3
    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

    bella
    how are you doing my husbend was told he had this april of last year he done all his trement he apt with hid surgrn he says he see nothing in there with the scope it looks clear he apt this monday to see the radashion doctor they did get all his tumer out.
    i feel sick and worried can we talk , you see like a angel. from what i i read
  • veronica12
    veronica12 Member Posts: 3
    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

    bella
    how are you doing my husbend was told he had this april of last year he done all his trement he apt with hid surgrn he says he see nothing in there with the scope it looks clear he apt this monday to see the radashion doctor they did get all his tumer out.
    i feel sick and worried can we talk , you see like a angel. from what i i read
  • veronica12
    veronica12 Member Posts: 3
    mom2.4 said:

    no zicam
    My daughter is an ENB survivor and, no, she never used Zicam.

    how
    how is she now if you do not mind me asking
  • cbreyer
    cbreyer Member Posts: 1
    alarson said:

    To Brian
    Brian 1145,
    My father was diagnosed with esthesioneuroblastoma the summer of 2004 at the age of 40. After doctoring for what was a supposed sinus infection and nasal polyp in Fargo, ND we recieved the news it was cancer. Fargo had not dealt with this kind before(at that point they were unable to diagnose the biopsy). We were referred to the Mayo Clinic in Rochester, MN. That summer he underwent surgery to remove the tumor (we were told it was about the size of a softball) followed by concurrent chemotherapy and radiation. He completed his chemo in Fargo that winter.

    I am unable to express my gratitude for the doctors in Rochester as I am proud to report that as of last week his 6 year scans and check-ups were clear!

    I encourage you to keep fighting, and my thoughts are with you!

    esthesioneuroblastoma
    alarson,

    16 years ago my brother was diagnosed with estesioneuroblastoma - he was 19 yr old at the time. I still occasionally read information on this type of cancer because of how rare it is. He also was diagnosed in Fargo, ND - so I found your post interesting. He was also referred to Mayo in Rochestor and had surgery there - but did his treatments in Fargo at RMCC. Just curious about how your Dad is doing and where in Fargo did he have treatment.
  • namaste
    namaste Member Posts: 11
    JPelar said:

    Mr. Bill, I'm wondering why you are going through chemo in advance of surgery... I had no chemo at all. In fact, I'm told that there is no clear cut chemo plan for Esther (what I call my esthesio tumor). For me, they just took it all out (tennis ball size) through my nose, and then I had 6 weeks of radiation three months later. Yours sounds very similar to mine. You should seriously read my book (Dealing with the Big C: Compassion). Save for you having chemo, your situation sounds remarkably similar to mine. Maybe the book will help you to see what's coming, and you'll be better prepared. Plus it's funny; I use humor to get through all stressful situations in my life, including Esther. Meanwhile, my sense of taste is actually fine now; back to what it was before surgery. I'm convinced my tumor was growing slowly for a very long time, and my sense of smell was pretty lousy as a result, and my sense of taste adjusted a long time ago. So, losing smell completely as a result of the surgery wasn't really much of a drop off.

    Good luck.

    Jack Pelar

    DEALING WITH THE BIG C -
    DEALING WITH THE BIG C - COMPASSION...wow...I could not put it down. Husband had esthioneuroblastomaectomy in 2006...stroke post surgery, unconcious for 1 month, 2 year IV antibiotic for MRSA at surgical site,2 additional frontal craniotomies searching for infection, radiation,seizures, rehab to walk/talk/feed self........currently dealing with macular degeneration in eye(blind in R eye) that was most radiated and myeloid maturation arrest probably from radiation......he is one of the funniest guys I know,says he was blessed to have cancer, he runs on treadmill, thinks each day is wonderful. I now can appreciate how blessed he was to be unconcious.....as he explains to inquiries, "I don't know I missed it all" Thank John and Colleen
  • namaste
    namaste Member Posts: 11
    JPelar said:

    Mr. Bill, I'm wondering why you are going through chemo in advance of surgery... I had no chemo at all. In fact, I'm told that there is no clear cut chemo plan for Esther (what I call my esthesio tumor). For me, they just took it all out (tennis ball size) through my nose, and then I had 6 weeks of radiation three months later. Yours sounds very similar to mine. You should seriously read my book (Dealing with the Big C: Compassion). Save for you having chemo, your situation sounds remarkably similar to mine. Maybe the book will help you to see what's coming, and you'll be better prepared. Plus it's funny; I use humor to get through all stressful situations in my life, including Esther. Meanwhile, my sense of taste is actually fine now; back to what it was before surgery. I'm convinced my tumor was growing slowly for a very long time, and my sense of smell was pretty lousy as a result, and my sense of taste adjusted a long time ago. So, losing smell completely as a result of the surgery wasn't really much of a drop off.

    Good luck.

    Jack Pelar

    DEALING WITH THE BIG C -
    DEALING WITH THE BIG C - COMPASSION...wow...I could not put it down. Husband had esthioneuroblastomaectomy in 2006...stroke post surgery, unconcious for 1 month, 2 year IV antibiotic for MRSA at surgical site,2 additional frontal craniotomies searching for infection, radiation,seizures, rehab to walk/talk/feed self........currently dealing with macular degeneration in eye(blind in R eye) that was most radiated and myeloid maturation arrest probably from radiation......he is one of the funniest guys I know,says he was blessed to have cancer, he runs on treadmill, thinks each day is wonderful. I now can appreciate how blessed he was to be unconcious.....as he explains to inquiries, "I don't know I missed it all" Thank John and Colleen