Esthesioneuroblastoma

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  • robe68
    robe68 Member Posts: 13
    KS said:

    Survior So Far
    I found out about my ENB in July 2009 when I went in for sinus surgery. I got online and reserched it myself to find the best place to get the surgery to remove it. UPMC turned out to be the best. They did endoscoptic surgery. I was in for 10 hours. It had spread to my right eye and into my brain cavity. I also had several lymph nodes in my neck that were positive. The whole hospital stay was three days. I live in Mississippi so the less time I had to stay in Pittsburg the better. I received great care and my stay, under the circumstances, could not have more pleasent. When I got back home I went through three months of radiation treatments five days a week. I received my last treatment five months ago and so far cancer free. They removed my entire olfactory gland. Had I not acted when I did I am sure I would not be here to write this. I am still suffering with a lot of the effects of the radiation but see light at the end of the tunnel. I am alive and I will adapt. I did loose 70lbs. and look good.

    To KS
    I am sorry to hear of your initial diagnosis. It does seem like ENB likes to spread to the lymph nodes in the neck though I've also read about it metastasizing to the spinal fluid. You did great research. UPMC is also a top institution for dealing with this rare cancer in addition to MD Anderson, Mayo Clinic, U of Michigan. Most major cancer centers have a protocol for dealing with initial diagnosis. However, despite following the protocols (craniofacial resection, radiation the 1st time in '06; chemotherapy, bilateral neck dissection and radiation w/chemotherapy for the 2nd in '08).I'm now dealing with a 2nd recurrence (in '10) now to lymph nodes in the mediastynum - underneath, between my clavicles near aortic valve. For now the tumors are small and not growing rapidly. One doctor wants to do aggressive chemo and stem cell transplant. Mayo Clinic suggests wait and see and treat intermittently approach. I chose the latter approach I will do another PET scan in August and see what that brings. So, I understand what you are going through - nasal irrigations, neck stiffness, dry mouth, etc. Otherwise, I'm feeling just fine, a bit anxious but overall grateful. Working hard to keep myself in optimal condition.
  • KS
    KS Member Posts: 7
    KS said:

    Survior So Far
    I found out about my ENB in July 2009 when I went in for sinus surgery. I got online and reserched it myself to find the best place to get the surgery to remove it. UPMC turned out to be the best. They did endoscoptic surgery. I was in for 10 hours. It had spread to my right eye and into my brain cavity. I also had several lymph nodes in my neck that were positive. The whole hospital stay was three days. I live in Mississippi so the less time I had to stay in Pittsburg the better. I received great care and my stay, under the circumstances, could not have more pleasent. When I got back home I went through three months of radiation treatments five days a week. I received my last treatment five months ago and so far cancer free. They removed my entire olfactory gland. Had I not acted when I did I am sure I would not be here to write this. I am still suffering with a lot of the effects of the radiation but see light at the end of the tunnel. I am alive and I will adapt. I did loose 70lbs. and look good.

    New Orleans Survior
    I noticed some of the surviors saying they were form New Orleans. I would be intrested in knowing how many of us are from New Orleans.
  • Alison6971
    Alison6971 Member Posts: 2
    SIRENAF42 said:

    Hi Alison
    Hi Allison.

    I was diagnosed with Esthesionueroblastom May 2008. I too went in for a routine polyup removal, twice..... They removed the first one, 6 months later another had grown in the exact same place, same size. They removed that one, and the lab results showed the cancer. I had a total of 3 endoscopic surgeries and then was referred to MD Anderson for 6 weeks of radiation treatment. Your questions are normal, and you should never be afraid to ask. I had to have 2 teeth pulled before treatments as they had old silver fillings and they felt the decayed teeth would not survive after radiation.

    Side effects for me started about 2 weeks into radiation treatments. My eyes became, and still are, very sensitive to the sun light, I have to always wear sunglasses outside and I have noticed some vision change. I had severe dry nose and dry mouth, in which I had to use a nasal rinse and mouth rinse to clean. You could and most likely will lose your saliva during radiation. So drinking A LOT of water is very important in keeping your mouth healthy. I lost my sense of taste and smell around the same time, week 2. I lost a small portion of my right eyebrow (where the radiation went in) and lost about 4 silver dollar size spots of hair on the side over my right ear and 2 on the back of my head. Where the radiation goes in, the hair will not grow back. where the radiation goes out, it kills the hair and it just slowly breaks off, but it will grow back. I actually cut mine short during treatments so I wouldnt have to mess with it. I was really tired the last couple weeks, and wanted one less thing to worry about.

    I was surprised and did not expect the radiation mask. You can go to YOU TUBE and key in Radiation Mask, and you will see some videos people created explaining what it is and how it is made. I didnt know about it, and was not at all prepared for it. Its nothing bad, just not what I expected. Around week 4 of treatments, I couldnt eat anthing that was dry and mostly drank Ensure, smoothies and shakes, soups, oatmeal and liquid type meals. Food had no taste nor smell and chewing was impossible to do without saliva. I lost about 40 pounds during my treatments and months recovering from treatments.

    I am now 1 year past my last radiation treatment. Cancer free :) I will tell you, the 3 - 4 months after radiation, was harder than the radiation. I can only smell every now and again. Its like I get a hint of smell, but nothing major. My tastebuds have returned about 80%. I cant eat anything acidy (tomatos, oranges, etc.) nor spicy. My hair has grown back, the same color and texture as before (well a lot more grey)

    2 weeks ago I had laser surgery of my sinus's to remove the scar tissue caused from the surgeries and to repair the damage from radiation, and for the first time in over 2 years... I CAN BREATHE THROUGH MY NOSE... its the little things we take for granted :)

    I didnt have anyone who knew anything about what I was going through when I was diagnosed, and am always available to help you whenever you have questions, are scared, or just need someone to talk to. Soo please feel free to email me at [email protected] so we can exchange numbers.

    I also have some pictures of my mask and the treatment I went through I can share with you. Good Luck, stay positive and think HAPPY thoughts... cancer is just a bumb in the road, it does not define who we are and what we are meant to be!!!!

    Cancer Free since 2008
    Sirena

    HELLO EVERYONE!!! :)
    I don't know if this is a good thing or a bad thing...but I completely forgot about this little space on the internet. :/

    Thank you to everyone who responded to my first post. :) My last day of radiation was on January 11th and basically...I can't complain THAT much. My sense of smell has come back (if it is less than before, I don't notice it) which is a wonderful thing. Between surgery and radiation I did have my four wisdom teeth pulled (one was in need of pulling, the others were removed as a precaution because of getting radiation) and I did experience thrush, tiredness and hair loss (the back of my head, but it has grown back)...but that is about it. I also had reduced saliva but I never lost it completely.

    I do have a question for those of you who underwent radiation. I don't know if it was because of the gadolidium (MRI) dye (they now have me marked as being allergic to it), the radiation treatments, or just the fact that I am getting older. I know people think I am crazy, but I had a "change" that was almost overnight. Does anyone else have any all over body pains or stiffness? If you did...how long did it last...and does it go away? This is crazy. :( I KNOW I didn't move like this before all of this happened...and now...I can hear my knees crack (more of a grinding sound) when I move them...and I just feel "old" and I am only 39. I have mentioned it to my radiation oncologist but he doesn't really seem to say anything definitive.

    My biggest thing now is having to get used to another doctor. My AWESOME doctor (ENT surgeon) is moving across the country and unfortunately for me, I can't follow him. I am devastated, but I am hoping that this is God's way of telling me I don't need him anymore. At my July appointment with him, they filmed the inside of my nose and I got to see it for the first time (since usually my head is tilted back with a 10-inch stick up it LOL). He pointed out my eye, brain, some artery...and then showed me the area where the tumor was removed. It was completely smooth and didn't look like anything had been done there. It was truly amazing.

    Sirena...I think it was you who had metioned being able to breathe for the first time through your nose. I think that is HIGHLY underrated. Every night, as I am trying to fall asleep, I say a "thank you" for being able to breathe through my nose with my mouth shut. It's such a wonderful feeling. :) Oh...and if you want...you (and anyone else who wants to) can contact me at [email protected] :)
  • KS
    KS Member Posts: 7

    HELLO EVERYONE!!! :)
    I don't know if this is a good thing or a bad thing...but I completely forgot about this little space on the internet. :/

    Thank you to everyone who responded to my first post. :) My last day of radiation was on January 11th and basically...I can't complain THAT much. My sense of smell has come back (if it is less than before, I don't notice it) which is a wonderful thing. Between surgery and radiation I did have my four wisdom teeth pulled (one was in need of pulling, the others were removed as a precaution because of getting radiation) and I did experience thrush, tiredness and hair loss (the back of my head, but it has grown back)...but that is about it. I also had reduced saliva but I never lost it completely.

    I do have a question for those of you who underwent radiation. I don't know if it was because of the gadolidium (MRI) dye (they now have me marked as being allergic to it), the radiation treatments, or just the fact that I am getting older. I know people think I am crazy, but I had a "change" that was almost overnight. Does anyone else have any all over body pains or stiffness? If you did...how long did it last...and does it go away? This is crazy. :( I KNOW I didn't move like this before all of this happened...and now...I can hear my knees crack (more of a grinding sound) when I move them...and I just feel "old" and I am only 39. I have mentioned it to my radiation oncologist but he doesn't really seem to say anything definitive.

    My biggest thing now is having to get used to another doctor. My AWESOME doctor (ENT surgeon) is moving across the country and unfortunately for me, I can't follow him. I am devastated, but I am hoping that this is God's way of telling me I don't need him anymore. At my July appointment with him, they filmed the inside of my nose and I got to see it for the first time (since usually my head is tilted back with a 10-inch stick up it LOL). He pointed out my eye, brain, some artery...and then showed me the area where the tumor was removed. It was completely smooth and didn't look like anything had been done there. It was truly amazing.

    Sirena...I think it was you who had metioned being able to breathe for the first time through your nose. I think that is HIGHLY underrated. Every night, as I am trying to fall asleep, I say a "thank you" for being able to breathe through my nose with my mouth shut. It's such a wonderful feeling. :) Oh...and if you want...you (and anyone else who wants to) can contact me at [email protected] :)

    OH the pain
    I also finished my treatment in Jan. I have had a lots of pain in my arms and shoulders. I also got what is called frozen shoulder. I was unable to move my left arm very much without a lot of pain. The doc said that can happen. Four weeks of therapy and it got better. My neck has also swollen. Doc also said that was from the radiation. That might never go away. I had my entire olfactory glad removed so smell and taste are gone forever. I still have some dry mouth and am now having dry eyes. The radiation doc says I can get new symptons even after a year.(had very aggressive radiation)I am still unable to work because I get real tired mid way through the day. Finding a job is not going to be easy(who is going to hire a 58 year old cancer survior when healthy young people can't find a job). Hope this helps.
  • MKURANZ
    MKURANZ Member Posts: 1
    KS said:

    New Orleans Survior
    I noticed some of the surviors saying they were form New Orleans. I would be intrested in knowing how many of us are from New Orleans.

    FROM THIBODEAUX
    My husband was dx Feb 2010 w/ENB: Kadish C, aggressive (mixed 2 and 3)...like all of you, a very long story. He has a long history of allergies...was getting more and more sinus infections and finally went to ENT who dx polyps. These were benign and all was well, a 'routine' CT scan showed a tumor about 3 cm in the olfactory area. This had eroded the skull base and was moving into the eye area(s). Anyhow, we didn't know what it was, because they couldn't safely biopsy it...he ended up having two major surgeries followed by proton radiation w/chemo. He recently finished all tx (July 2010). He grew up in cane fields outside of New Orleans, and has always struggled w/allergies. He was a healthy 40 yr old man w/nasty allergies, so we thought. Anyhow, we are taking it day by day and really, really trying to stay grounded. The thought of recurrence is in the back of both of our heads, but we really try not to go there. I think this site is a bit scary for us both, but we want to be part of the support and also be there for others!

    We were scared, didn't have time to 'look' for MDs, since we didn't know what cancer he had...so progressed...we went with University of Florida's recommendation to be seen in St. Pete for surgery, Dr. Lanza (w/ENB experience) and Dr. Jobe (neurosurgeon) and returned to UF Proton center, Dr. Malyapa, and Dr. Guthrie, a professor, for chemo (where we live in Jacksonville, fl). He's recovering, and we are taking a day at a time for now.
  • SIRENAF42
    SIRENAF42 Member Posts: 202
    MKURANZ said:

    FROM THIBODEAUX
    My husband was dx Feb 2010 w/ENB: Kadish C, aggressive (mixed 2 and 3)...like all of you, a very long story. He has a long history of allergies...was getting more and more sinus infections and finally went to ENT who dx polyps. These were benign and all was well, a 'routine' CT scan showed a tumor about 3 cm in the olfactory area. This had eroded the skull base and was moving into the eye area(s). Anyhow, we didn't know what it was, because they couldn't safely biopsy it...he ended up having two major surgeries followed by proton radiation w/chemo. He recently finished all tx (July 2010). He grew up in cane fields outside of New Orleans, and has always struggled w/allergies. He was a healthy 40 yr old man w/nasty allergies, so we thought. Anyhow, we are taking it day by day and really, really trying to stay grounded. The thought of recurrence is in the back of both of our heads, but we really try not to go there. I think this site is a bit scary for us both, but we want to be part of the support and also be there for others!

    We were scared, didn't have time to 'look' for MDs, since we didn't know what cancer he had...so progressed...we went with University of Florida's recommendation to be seen in St. Pete for surgery, Dr. Lanza (w/ENB experience) and Dr. Jobe (neurosurgeon) and returned to UF Proton center, Dr. Malyapa, and Dr. Guthrie, a professor, for chemo (where we live in Jacksonville, fl). He's recovering, and we are taking a day at a time for now.

    ENB Survivor
    Its a scary journey, but always stay positive. I was diagnosed in 08 and am almost 2 years clean. Everyones journey is different, but truly believe that if you stay positive, and allow yourself hope, happiness always follow.

    Laugh at cancer, its the best medicine :)

    Sirena
  • Elliot16
    Elliot16 Member Posts: 6

    Survivor since 2001
    I'm not sure where to add to this thread, so I just picked a spot!

    I was first diagnosed in April, 2001. We thought I had polyps, but they were unable to remove the whole thing through my nostril. I had a cranial resection to remove the remainder, which included the right olfactory nerve. I have had all my treatment at the University of Michigan, by their Cranial Base team. They got negative margins, which dictated no radiation according to their protocol. My sense of smell was damaged, but I could still taste/smell a few things.

    I had MRIs every 4 months until April, 2004, when a spot which had been believed to be scar tissue doubled in size. I had another cranial resection, this time followed by 6 weeks of radiation. At this point, my sense of smell was gone. I've learned to live with it - your brain is an amazing thing. You eat from memory - if it looks like a brownie, and has the right texture, your brain says it's a brownie!

    I had a false alarm in 2008, which turned out to be scar tissue. However, it came back in Nov., 2009, and has moved to the right side of my head, outside my brain. Since it's so far from the original site, it's assumed to have metastasized to my spinal fluid. I completed 4 weeks of whole brain radiation on May 7, and am currently bald! I won't know if this took care of the problem until my next MRI in September.

    For anyone looking for treatment options, I would highly recommend the University of Michigan. The doctors are fabulous, the treatment I've received has been great, and I feel that they've kept me alive this long.

    Good luck to anyone facing this disease!
    Tammy

    Good luck Tammy
    I check here once in a while..not much activity...your seems to be the last post....hope all is well...hang in there
  • 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

    to Eduardo - esthesio
    Eduardo; did you ever get help? the surgery?
    I would strongly suggest Univeristy of Virginia (UVA)Charlottesville, Dr. Levin. It is a major research center for this SPECIFIC cancer, and when my insurance was not going ot pay for my craniofacial resection to remove the tumor, UVA negotiated for the best cash price for the surgeon, hospital, and all expenses in one package for me. I can give more detail if you or anyone is still in need of treatment. $180,000 is WAY TOO MUCH>
    Please let me/us know how you are doing. Kate
  • SIRENAF42 said:

    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 sirena[email protected]

    Sirena

    yes breath!
    Sirena; it is good for me to hear from someone who is as open and forthcoming about how crazy this (ENB) cancer can make us.

    I just want to urge you and all of us to find a support group or see a counselor now, let the stress out to someone other than family or friends.

    I waited too long - denial has been a comfortable place for me for all these 11 years and one recurrence. I guess I was storing it all inside somewhere, and recently it came to a head. But, just want to say to EVERYONE facing ENB or any brain cancer - that going to get help when you really don't feel you need it is the best way.

    Go before you fall off the Denial Train, or so you never have to. I am an old-fashioned boot strapper, and just kept trudging along. Think I was trying to keep being that "brave" person who everyone admired, and depression/anxiety kinda snuck up on me. I was fearful to face the need for mental and emotional support outside my (very supportive) family circle.

    Have longed for a support group for a long time - jealous of breast cancer groups that are a dime a dozen (not meaning to be crass). But finding a brain cancer support group is d-near impossible. Spoke to my ENT/oncologist today and he admitted that it's hard, but that I really needed one that includes primarily ENB patiets, so I searched out and found this site.

    Getting counseling early would help any of us find out where we REALLY are on issues of health, longevity, career, dreams, hopes, prognosis, feelings....rather than just moving on through and moving on following treatment.

    Don't be like me and wish you hadn't waited so long, cause the need for it wasn't glaringly obvious.

    BLESSINGS AND A PEACH-FILLED CHRISTMAS TO ALL.
  • sheryljr
    sheryljr Member Posts: 1
    esthesioneuroblastoma
    Hi! Saw your post and wanted to let you know my brother in law was first diagnosed in 1983, had a tumor removed, had radiation and it stayed away for 19 years! It did come back in 2002 but he's been fighting it since and so far, still hanging in there! As far as we know, he is the longest survivor of this type of cancer and has been a bit of a "guinea pig" when it comes to treatment options, etc.

    He is an awesome, amazing person with a great attitude and a very positive spirit! I KNOW it has helped him through the ups and downs of this journey. If I can help answer any questions or see if Mike can get a login of his own and speak with you, I'd be happy to try and get him to come on :)
    Sheryl
  • Katnoli
    Katnoli Member Posts: 1
    esthesioneuroblastoma
    Hi everyone,

    My name is Kathleen and Im currently receiving radiation treatment for ENB. I developed it while I was pregnant and so it wasn't diagnosed right away. I too would love to speak with someone who has gone through this, specifically during the radiation. I had my surgery performed endoscopically at LSU medical center. The Doctors were wonderful. My tumor had invaded the ethmoid sinus but for the most part was confined to the nasal cavity. It did erode away at my skull but the Doctors did not feel the dura was involved. I've had alot of emotions throughout this and would like to talk with someone who understands this cancer.

    Thanks a bunch

    Kathleen
  • msjr
    msjr Member Posts: 2
    Katnoli said:

    esthesioneuroblastoma
    Hi everyone,

    My name is Kathleen and Im currently receiving radiation treatment for ENB. I developed it while I was pregnant and so it wasn't diagnosed right away. I too would love to speak with someone who has gone through this, specifically during the radiation. I had my surgery performed endoscopically at LSU medical center. The Doctors were wonderful. My tumor had invaded the ethmoid sinus but for the most part was confined to the nasal cavity. It did erode away at my skull but the Doctors did not feel the dura was involved. I've had alot of emotions throughout this and would like to talk with someone who understands this cancer.

    Thanks a bunch

    Kathleen

    2005 Esthesioneuroblastoma diagnosis
    Hi Kathleen, I was diagnosed with ENB October of 2005 as a 37 year old female. It started as a polyp in my nose and upon further inspection we found out it was ENB that had invaded my brain as well. I immediately went to the Mayo Clinic in Rochester, MN and had surgery to remove all of the cancer. Then in February I started my 8 weeks of radiation. No chemo was done at that time. The radiation was not too bad with the exception of hair loss, thrush, and loss of taste for awhile. I am happy to report that I have been cancer free going on six years!!! Hang in there and know that things may seem bad right now but there is hope! Good luck and God bless!

    Maria
  • SIRENAF42
    SIRENAF42 Member Posts: 202
    Katnoli said:

    esthesioneuroblastoma
    Hi everyone,

    My name is Kathleen and Im currently receiving radiation treatment for ENB. I developed it while I was pregnant and so it wasn't diagnosed right away. I too would love to speak with someone who has gone through this, specifically during the radiation. I had my surgery performed endoscopically at LSU medical center. The Doctors were wonderful. My tumor had invaded the ethmoid sinus but for the most part was confined to the nasal cavity. It did erode away at my skull but the Doctors did not feel the dura was involved. I've had alot of emotions throughout this and would like to talk with someone who understands this cancer.

    Thanks a bunch

    Kathleen

    ENB Survivor
    Hi Kathleen, I was diagnosed in 2008, ENB in my Ethmoid sinus and nasal cavity. 2 endoscopic surgeries and the 6 weeks IMRT radiation treatments. As of Dec 2010, still cancer free.

    Please feel free to email me at [email protected] if youd like to discuss the treatments and what some of the side effects may be.

    Hang in there!!
  • aajoxx
    aajoxx Member Posts: 1

    Survivor since 2001
    I'm not sure where to add to this thread, so I just picked a spot!

    I was first diagnosed in April, 2001. We thought I had polyps, but they were unable to remove the whole thing through my nostril. I had a cranial resection to remove the remainder, which included the right olfactory nerve. I have had all my treatment at the University of Michigan, by their Cranial Base team. They got negative margins, which dictated no radiation according to their protocol. My sense of smell was damaged, but I could still taste/smell a few things.

    I had MRIs every 4 months until April, 2004, when a spot which had been believed to be scar tissue doubled in size. I had another cranial resection, this time followed by 6 weeks of radiation. At this point, my sense of smell was gone. I've learned to live with it - your brain is an amazing thing. You eat from memory - if it looks like a brownie, and has the right texture, your brain says it's a brownie!

    I had a false alarm in 2008, which turned out to be scar tissue. However, it came back in Nov., 2009, and has moved to the right side of my head, outside my brain. Since it's so far from the original site, it's assumed to have metastasized to my spinal fluid. I completed 4 weeks of whole brain radiation on May 7, and am currently bald! I won't know if this took care of the problem until my next MRI in September.

    For anyone looking for treatment options, I would highly recommend the University of Michigan. The doctors are fabulous, the treatment I've received has been great, and I feel that they've kept me alive this long.

    Good luck to anyone facing this disease!
    Tammy

    Survivor since 2008
    Tammy,

    It is great to hear your wonderful experience from The University of Michigan. I also received treatment for esthesioneuroblastoma at The University of Michigan, under the care of the Cranial Base team. I was initially diagnosed in October 2008. I underwent two surgeries to remove the tumor followed by 7 weeks of radiation. I lost my sense of taste/smell after the second surgery, but you are spot on when you say that the brain is amazing! It truly does work off of memory recall!! I finished my radiation in April 2009. My MRI's have been clear, which I am extremely thankful for. I have my next 6 month follow-up next week, so I am crossing my fingers. I have been suffering severe bloody noses for the past six months, so I am hoping this has been caused by the reconstruction of my nasal cavity, which they said could possibly happen.

    Good luck to you and anyone else facing this disease!
  • bennytoby
    bennytoby Member Posts: 2
    aajoxx said:

    Survivor since 2008
    Tammy,

    It is great to hear your wonderful experience from The University of Michigan. I also received treatment for esthesioneuroblastoma at The University of Michigan, under the care of the Cranial Base team. I was initially diagnosed in October 2008. I underwent two surgeries to remove the tumor followed by 7 weeks of radiation. I lost my sense of taste/smell after the second surgery, but you are spot on when you say that the brain is amazing! It truly does work off of memory recall!! I finished my radiation in April 2009. My MRI's have been clear, which I am extremely thankful for. I have my next 6 month follow-up next week, so I am crossing my fingers. I have been suffering severe bloody noses for the past six months, so I am hoping this has been caused by the reconstruction of my nasal cavity, which they said could possibly happen.

    Good luck to you and anyone else facing this disease!

    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.
  • bennytoby
    bennytoby Member Posts: 2
    mom2.4 said:

    This is my first
    This is my first introduction to this web site. I'm glad to have found it, especially since ENB is so rare. Each of the posts have been very encouraging.

    My daughter was diagnosed in Oct. of 2007 with ENB (Kadish stage C), at the age of 13. She had tumor (4cm x 5cm) resection at Seattle Children's. She had clean margins except where the tumor had invaded the fatty tissue around the eye orbit. She then went for proton beam radiation at MD Anderson Proton Center (for 8 weeks). Two months after radiation ended she had her follow-up appt. and both the MRI and biopsy showed irregular cells, which the doctor's decided was either residual or recurrent ENB. She then underwent 4 rounds of chemo at Seattle Children's. Three different types of Chemo were used: carboplatin, ifosfamide, and etoposide. She has been cancer free since July 2008. We have had amazing doctor's through the Seattle Cancer Care Alliance. Her surgeons are both from Harborview in Seattle, and have done an amazing job at tumor removal and reconstruction.

    For those of you who had resection followed by radiation, what stage was your cancer and did the surgeons get clean margins?

    My daughter continues to have PT scans and MRI's every 3 months. Although at her last appt. the Oncologist said that she could move to every 4 months and do MRI's only, since she has been cancer free for nearly 2 years.

    I would highly recommend Proton Beam radiation for anyone with ENB. It has very little splatter and a very low exit dose, therefore has fewer side effects than traditional photon radiation. My daughter did not lose any hair, nor sense of smell, and did not have negative salivary side effects.

    I hope this is helpful. Everyone's comments have been helpful and encouraging to me. If I can be a help to anyone going through what we went through, I'd be more than happy to.

    So sorry you are going
    So sorry you are going through this with a child. I am 60 and just diagnosed after thinking it was a nasal polyp. Never would have suspected a cancerous tumor. I was told it was more common in children, but was most patients at UVA have been adults. I too was wondering what stage all the writers were in. I am lucky to have found mine early, and am in Stage A. The tumor is small compared to your daughter's (5mm x 15mm). Taking radiation treatments at UVA, to be followed by cranial resection. Its their protocol at UVA, and they think by doing radiation first the margins will be better.

    Hope she is still cancer free -
  • mom2.4
    mom2.4 Member Posts: 3
    enb
    Yes, my daughter is still cancer free, going on 3 years!!!
  • Jlybn
    Jlybn Member Posts: 1

    MD Anderson
    Hi, my husband was diagnosed in August 2009 with an esthesioneuroblastoma. He was not a candidate for surgery because the tumor was so large and encased both carotid arteries and optic nerves. He had 33 radiation treatments and 4 rounds of chemo. He was just told by his oncologist that more chemo will not shrink the tumor.
    The neurosurgeon suggested MD Anderson and we are just starting to look into it. We have a HMO insurance and I doubt that they will pay for treatment there.
    This is the only place I have seen that multiple survivors of this rare tumor can support each other.
    Anything you would like to share is welcomed.

    MD Anderson
    How is your husband now? Did MD Anderson help? My husband was diagnosed October 2010. His tumor also is very large and non-resectable. He has undergone 4 rounds of Chemo, 28 radiation treatments and 5 days of radio therapy. The tumor shrunk 25% with the Chemo, but no more with the radiation. We are in a holding pattern waiting to have PET/CT in July.
  • Amynicole0116
    Amynicole0116 Member Posts: 2
    I was diagnosed with ENB when I was 15
    I am now 23 and so far, so good! I had a couple surgeries and radiation to get rid of it. Mine was the size of an acorn and apparently it was caught pretty early. Does anybody know if they're close to finding out what causes this? And what is the likelihood of it coming back?
  • SIRENAF42
    SIRENAF42 Member Posts: 202

    I was diagnosed with ENB when I was 15
    I am now 23 and so far, so good! I had a couple surgeries and radiation to get rid of it. Mine was the size of an acorn and apparently it was caught pretty early. Does anybody know if they're close to finding out what causes this? And what is the likelihood of it coming back?

    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.