Esthesioneuroblastoma

namaste

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

Unknown

This comment has been removed by the Moderator

Alison6971

Treatment in Progress
Hi Everyone!

I was diagnosed with esthesioneuroblastoma on August 20th...a complete shocker after thinking I was going to receive a clean bill of health following sinus surgery to remove a "polyp" (I was later told that he removed 90% of the tumor). My local doctor referred me to Dr. Alexander Chiu at the Hospital at the University of Pennsylvania. I met with him the following Monday and was scheduled for surgery on September 24th. So far so good. Dr. Chiu removed remaining part of the tumor (which was 0.6 cm) and whatever was around it until he felt certain the area was clean. Thankfully, the neurosurgeon wasn't needed. At my last appointment on Tuesday he said I was healing very nicely.

Up next is my appointment with my radiologist/oncologist on Monday. For those of you who have had radiation...what kinds of side effects did you have? Teeth problems? Vision problems? Fatigue? Did you lose your sense of smell, even if it was only temporary? Did you lose your eyebrows and eyelashes (silly question I know, but still, I want to know LOL).

So far, I feel like I have had the best possible outcome of a very bad situation. I don't know if that is a false sense of security or not. I can't say enough about Dr. Chiu. He is amazing and I HIGHLY recommend him. He is extremely knowledgeable and his bedside manner is wonderful. Hopefully I can say the same for the radiologist/oncologist.

PBailey

Alison6971 said:

Treatment in Progress
Hi Everyone!

I was diagnosed with esthesioneuroblastoma on August 20th...a complete shocker after thinking I was going to receive a clean bill of health following sinus surgery to remove a "polyp" (I was later told that he removed 90% of the tumor). My local doctor referred me to Dr. Alexander Chiu at the Hospital at the University of Pennsylvania. I met with him the following Monday and was scheduled for surgery on September 24th. So far so good. Dr. Chiu removed remaining part of the tumor (which was 0.6 cm) and whatever was around it until he felt certain the area was clean. Thankfully, the neurosurgeon wasn't needed. At my last appointment on Tuesday he said I was healing very nicely.

Up next is my appointment with my radiologist/oncologist on Monday. For those of you who have had radiation...what kinds of side effects did you have? Teeth problems? Vision problems? Fatigue? Did you lose your sense of smell, even if it was only temporary? Did you lose your eyebrows and eyelashes (silly question I know, but still, I want to know LOL).

So far, I feel like I have had the best possible outcome of a very bad situation. I don't know if that is a false sense of security or not. I can't say enough about Dr. Chiu. He is amazing and I HIGHLY recommend him. He is extremely knowledgeable and his bedside manner is wonderful. Hopefully I can say the same for the radiologist/oncologist.

Alison
Hi Alison,
I too thought I would get a clean bill of health after my routine "polyp removal" and NEVER expected my diagnosis of Esthesioneuroblastoma on 10/06/08. I do believe that the initial surgery removed all of the "tumor" however I still underwent endoscopic resection (@UPMC Pittsburgh) of the olfactory nerve & blub on the left side (there were additional cancer cells found during surgery) in Nov. 08. I wonder now if radiation would have "gotten" them. I had CyberKnife radiation in March 09 and have had clean scans since that time. Still on the every 3 month cycle but hopefully will continue to be cancer free.

With the CyberKnife I had very little side effects, the treatment was completed in 5 days and I had a few dime sized bald patches of hair where the beams were concentrated and a little redness of my cheeks. Other than that just the usual tiredness. My radiation was concentrated on the surgical/tumor bed and did not effect the saliva glands at all which I understand can be hard.

Currently I cannot smell and do not know if that will ever come back, although technically it could, since I still have the right bulb and nerve, my local ENT is not ruling it out for at least another year and I remain prayerful.

I wish you well on your journey, my advise for you would to ask many questions, read as much as you can handle and take notes to the doctors, but in the end choose the best treatment for you! You will be in my thoughts and prayers.

Blesings,
Patti

SIRENAF42

Alison6971 said:

Treatment in Progress
Hi Everyone!

I was diagnosed with esthesioneuroblastoma on August 20th...a complete shocker after thinking I was going to receive a clean bill of health following sinus surgery to remove a "polyp" (I was later told that he removed 90% of the tumor). My local doctor referred me to Dr. Alexander Chiu at the Hospital at the University of Pennsylvania. I met with him the following Monday and was scheduled for surgery on September 24th. So far so good. Dr. Chiu removed remaining part of the tumor (which was 0.6 cm) and whatever was around it until he felt certain the area was clean. Thankfully, the neurosurgeon wasn't needed. At my last appointment on Tuesday he said I was healing very nicely.

Up next is my appointment with my radiologist/oncologist on Monday. For those of you who have had radiation...what kinds of side effects did you have? Teeth problems? Vision problems? Fatigue? Did you lose your sense of smell, even if it was only temporary? Did you lose your eyebrows and eyelashes (silly question I know, but still, I want to know LOL).

So far, I feel like I have had the best possible outcome of a very bad situation. I don't know if that is a false sense of security or not. I can't say enough about Dr. Chiu. He is amazing and I HIGHLY recommend him. He is extremely knowledgeable and his bedside manner is wonderful. Hopefully I can say the same for the radiologist/oncologist.

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 sirenaf40@aol.com 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

namaste

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 sirenaf40@aol.com 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

radiation
Radiation,post-esthesioneuroblastomaectomy 8/06 for my husband was a 6 wk course......starting several weeks after surgery. My assessment is that the radiation resulted in a reduction of tearing in his r eye-temporarily resulting in corneal ulcers. He was also very tired. One thing that helped us during the presurgical wait and the period of radiation was the use of medition tapes put out by HEALTH JOURNEYS. They offered specific titles to help us maximize what we could do to get the most out of each step of the journey and to get us in the right frame of mind. Nan

Archie82

Alison6971 said:

Treatment in Progress
Hi Everyone!

I was diagnosed with esthesioneuroblastoma on August 20th...a complete shocker after thinking I was going to receive a clean bill of health following sinus surgery to remove a "polyp" (I was later told that he removed 90% of the tumor). My local doctor referred me to Dr. Alexander Chiu at the Hospital at the University of Pennsylvania. I met with him the following Monday and was scheduled for surgery on September 24th. So far so good. Dr. Chiu removed remaining part of the tumor (which was 0.6 cm) and whatever was around it until he felt certain the area was clean. Thankfully, the neurosurgeon wasn't needed. At my last appointment on Tuesday he said I was healing very nicely.

Up next is my appointment with my radiologist/oncologist on Monday. For those of you who have had radiation...what kinds of side effects did you have? Teeth problems? Vision problems? Fatigue? Did you lose your sense of smell, even if it was only temporary? Did you lose your eyebrows and eyelashes (silly question I know, but still, I want to know LOL).

So far, I feel like I have had the best possible outcome of a very bad situation. I don't know if that is a false sense of security or not. I can't say enough about Dr. Chiu. He is amazing and I HIGHLY recommend him. He is extremely knowledgeable and his bedside manner is wonderful. Hopefully I can say the same for the radiologist/oncologist.

side effects
I was lucky to have had not many side effects. Mainly fatigue, I did have very little hair loss, My doctor told me about my eyesight that in a year or two I could develope catoracs but could have that fixed. The only disappointment was I did loose my sence of smell and most of my sence of taste and 5 years later it has'nt returned, but I still like to eat.

SIRENAF42

Archie82 said:

side effects
I was lucky to have had not many side effects. Mainly fatigue, I did have very little hair loss, My doctor told me about my eyesight that in a year or two I could develope catoracs but could have that fixed. The only disappointment was I did loose my sence of smell and most of my sence of taste and 5 years later it has'nt returned, but I still like to eat.

Sense of smell / taste
My sense of smell is on and off again. Sometimes I get a faint hint of something, and then---- its gone. I tell my friends its like trying to start an old car, you think for a second its gonna turn over... you get excited .... and then, its dead. My taste is still muted, but I do have some tasting ability. Its been 13 months since my last treatment and I have just accepted this is who I am.. The girl who can see the roses but cant smell them. The girl who will still lick the frosting bowl, but can only tell you its sweet and not what flavor it is. I will say, I do miss my 3:00 diet coke, cause I still cant tolerate carbonation ... I guess it beats the alternative. So I complain with humor and am grateful for what I do have.

famfrench

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

Thanks so much for your response, Sirena.
Yours was the first info I saw when I looked up this diagnosis. I have so many questions! I was just diagnosed 12/15, and scheduled for an MRI and Pet scan on 12/22 and surgery is scheduled for 12/29. I am still trying to digest everything and am having a really hard time coming to terms with what they say they are going to do to me. They listed an anterior craniofacial resection, medial maxillectomy, pericranial flap, and lumbar drain. They gave me a CD-Rom with some info but it is still hard to wrap my head around all this. Did you have any/all of these procedures?

dmpatt

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

1998
I was diagnosed in Dec of 1998. Had the surgery followed by 42 treatments of radiation, and was ok for about five years. Then had a lymph node recurrence in the neck. That was removed followed by 10 doses of radiation. So far so good. I've developed a little meningioma from the first radiation, but it seems benign.
Originally, my ENT surgeon told me that the tumor broke apart when it was removed. It's possible that caused the recurrence.

Don't forget. They got the cancer. You're good to go, so go! And MD Anderson is one of the best. Getting the right docs--very important.

dmpatt

Alison6971 said:

Treatment in Progress
Hi Everyone!

I was diagnosed with esthesioneuroblastoma on August 20th...a complete shocker after thinking I was going to receive a clean bill of health following sinus surgery to remove a "polyp" (I was later told that he removed 90% of the tumor). My local doctor referred me to Dr. Alexander Chiu at the Hospital at the University of Pennsylvania. I met with him the following Monday and was scheduled for surgery on September 24th. So far so good. Dr. Chiu removed remaining part of the tumor (which was 0.6 cm) and whatever was around it until he felt certain the area was clean. Thankfully, the neurosurgeon wasn't needed. At my last appointment on Tuesday he said I was healing very nicely.

Up next is my appointment with my radiologist/oncologist on Monday. For those of you who have had radiation...what kinds of side effects did you have? Teeth problems? Vision problems? Fatigue? Did you lose your sense of smell, even if it was only temporary? Did you lose your eyebrows and eyelashes (silly question I know, but still, I want to know LOL).

So far, I feel like I have had the best possible outcome of a very bad situation. I don't know if that is a false sense of security or not. I can't say enough about Dr. Chiu. He is amazing and I HIGHLY recommend him. He is extremely knowledgeable and his bedside manner is wonderful. Hopefully I can say the same for the radiologist/oncologist.

radiation
Had my surgery in NY and radiation under Dr. Flickenger in 1998 and 1999. A very good guy, and held in high esteem by other docs. The effects of radiation depends a lot on the angles the treatments take. The techs and doctor should be able to tell you what might be effected. You will have fatigue. And the salivary glands can be compromised eventually, but there are sprays and gum for that. Just make sure you rest after treatments. Give yourself a break. Your job is to get well. Nothing else.

You'll do well. The treatments are so much better now.

TBates

Alison6971 said:

Treatment in Progress
Hi Everyone!

I was diagnosed with esthesioneuroblastoma on August 20th...a complete shocker after thinking I was going to receive a clean bill of health following sinus surgery to remove a "polyp" (I was later told that he removed 90% of the tumor). My local doctor referred me to Dr. Alexander Chiu at the Hospital at the University of Pennsylvania. I met with him the following Monday and was scheduled for surgery on September 24th. So far so good. Dr. Chiu removed remaining part of the tumor (which was 0.6 cm) and whatever was around it until he felt certain the area was clean. Thankfully, the neurosurgeon wasn't needed. At my last appointment on Tuesday he said I was healing very nicely.

Up next is my appointment with my radiologist/oncologist on Monday. For those of you who have had radiation...what kinds of side effects did you have? Teeth problems? Vision problems? Fatigue? Did you lose your sense of smell, even if it was only temporary? Did you lose your eyebrows and eyelashes (silly question I know, but still, I want to know LOL).

So far, I feel like I have had the best possible outcome of a very bad situation. I don't know if that is a false sense of security or not. I can't say enough about Dr. Chiu. He is amazing and I HIGHLY recommend him. He is extremely knowledgeable and his bedside manner is wonderful. Hopefully I can say the same for the radiologist/oncologist.

Allison, The exact same
Allison, The exact same thing happen to me. I had a sinus infection that didn't clear up with regular meds and I went to the ENT dortor who gave me stronger meds then when that cleared he said I had a polyp. When he went in to remove it, he found the cancer. At the time (2003) We swarched everywhere for information. I hope I have been of some help. I have been cancer free since Feb. 2003. No reaaurance or problems. I went throught the 6 weeks of treatment after surgery and my eyesight never changed and i now live my new normal life. The tiredness will get better. I did loos eyelashes, eyebrows, and mystash, never loss the beard. That will all grow back. I cannot smell anymore and I am from the New Orleans area and the spices of the food I will never be able to enjoy again. If I eat a oyster poyboy I'll remember what it tast like and it helps. Best of luck with your recovery. As far as teeth problems and dry mouth issues there are a few. I cannot get teeth pulled anymore

TBates

7 year and counting
I have been cancer free for 7 years no major problems! My email address is nolaavg@yahoo.com

micah

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

esthesionueroblastoma
hello,
i was researching on this specific cancer and found this....i was reading through so many of the peoples posts in here. My dad was diagnosed with esthesionueroblastoma in 1997...i was just about 13 at the time.we have been through it all id say..his first two operations were done at UCSF...the third i think was at LA as well as the fourth,chemo was at UCSF,radiation was in san francisco too...proton was in loma linda...then he underwent another operation and more chemo...his last doctor was in LA again and we did chemo again there last year...

micah

olfactory
hi,
my dad was diagnosed with esthesionueroblastoma in 1997...in his olfactory nerve..they had to remove his olfactory in the first operation in 97'....hes undergone about 5 or more operations since and chemo in between and radiation and proton...and herbal stuff too...still fighting till today

Elliot16

famfrench said:

Thanks so much for your response, Sirena.
Yours was the first info I saw when I looked up this diagnosis. I have so many questions! I was just diagnosed 12/15, and scheduled for an MRI and Pet scan on 12/22 and surgery is scheduled for 12/29. I am still trying to digest everything and am having a really hard time coming to terms with what they say they are going to do to me. They listed an anterior craniofacial resection, medial maxillectomy, pericranial flap, and lumbar drain. They gave me a CD-Rom with some info but it is still hard to wrap my head around all this. Did you have any/all of these procedures?

My history
able to share some good news....had surgery on 11/22/02 at age 52.....cranaiofacial resection followed by radiation.....while I have to irrigate twice daily...all else is good.....surgery was done at Memorial Sloan Kettering

Gratefull1

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 sirenaf40@aol.com 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

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.

SIRENAF42

Gratefull1 said:

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.

MDAnderson Patient
I went and still continue to go to MDAnderson. Diagnosed with Esthesio is May 2008. My dr was Dr. Hanna.

I was impressed with MDAnderson, am so blessed they accepted me. I did a self referral (you can go online and review) or you can have you dr refer you. The financial dept will review your insurance and what you are required to pay out of pocket. Up front, all I had to pay was the deductible for that year and made monthly payments on what was not covered. Once of the things I loved about the system was that all your dr's, appts, etc. are all billed through MDA and you dont get all these different bills from different offices.

Dont be afraid to go and find out what they will or will not cover. They have financial assistance, housing assistance and multiple programs they can discuss with you.

Good luck and keep up posted.

Sirena
sirenaf40@aol.com

lester537

Seven Year Survivor
I was diagnosed with ENB in Feb 2003. Underwent chemo first under the care of Dr. Sillers at UAB in Birmingham, AL. My tumor had already gone past my cribiform plate into my brain cavity. Dr. Sillers elected not to do surgery since my cancer was in the late stages. I first underwent chemo. After only two weeks, the tumor was almost gone. I had another two chemo treatments over the next six weeks. By then the tumor was essentially gone. The doctors elected for me to have radiation treatment to make sure it was completely eliminated. I had 25 daily radiation sessions. After the radiation treatment, Dr. Sillers performed exploratory surgery to determine if any of the tumor remained and if my cribiform plate still had a hole in it. He found that everything had completely returned to normal.

I have had anosmia since the onset of the tumor in November 2002. I sometimes have "phantom smells" where I think I smell something then realize I can't. I can still remember what things smell like and often have dreams about being about to smell.

Otherwise, I have had no major issues whatsoever. I continue to rinse my nose with a saline/baking soda solution every day as the radiation causes "scaling" inside your nose for years after treatment.

mom2.4

SIRENAF42 said:

MDAnderson Patient
I went and still continue to go to MDAnderson. Diagnosed with Esthesio is May 2008. My dr was Dr. Hanna.

I was impressed with MDAnderson, am so blessed they accepted me. I did a self referral (you can go online and review) or you can have you dr refer you. The financial dept will review your insurance and what you are required to pay out of pocket. Up front, all I had to pay was the deductible for that year and made monthly payments on what was not covered. Once of the things I loved about the system was that all your dr's, appts, etc. are all billed through MDA and you dont get all these different bills from different offices.

Dont be afraid to go and find out what they will or will not cover. They have financial assistance, housing assistance and multiple programs they can discuss with you.

Good luck and keep up posted.

Sirena
sirenaf40@aol.com

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.