Esthesioneuroblastoma

heyxt

Advice Needed!
A relative of mine was diagnosed with ENB in 1997 and went thru rad/chemo. It went into remission for a number of years but now it is back.
He has completed radiation and 5 sessions of Timador for chemo but the tumor is not responding so they want to discontinue the treatment.
He is being treated at Yale (CT) and they are unsure of how to proceed.
I am trying to help by trying to get any advice I can on any treatments / hospitals / doctors that might be able to help so I can pass that information onto him.

Any Advice?
Thanks!!
Christy Kelly

SIRENAF42

heyxt said:

Advice Needed!
A relative of mine was diagnosed with ENB in 1997 and went thru rad/chemo. It went into remission for a number of years but now it is back.
He has completed radiation and 5 sessions of Timador for chemo but the tumor is not responding so they want to discontinue the treatment.
He is being treated at Yale (CT) and they are unsure of how to proceed.
I am trying to help by trying to get any advice I can on any treatments / hospitals / doctors that might be able to help so I can pass that information onto him.

Any Advice?
Thanks!!
Christy Kelly

ENB
Woow, I hate to hear that it has come back. Being an ENB survivor myself, it does scare me to hear. Can or have they done a surgical removal of the Tumor itself?

mom2.4

theclassactman said:

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

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

heyxt

SIRENAF42 said:

ENB
Woow, I hate to hear that it has come back. Being an ENB survivor myself, it does scare me to hear. Can or have they done a surgical removal of the Tumor itself?

ENB
He has had surgical removal in the past. This isn't in a spot that they want to do surgery on and there is more than 1 spot so they want to go the chemo route.
It's been difficult with the lack of information so I am trying to find out from other ENB patients as to what has worked for them so that when he meets with his new doctor on Friday he can discuss and talk about any options that he might have that they haven't tried yet.

brian1145

diagnosed with Esthesioneuroblastoma 04/23/2010
Ive have just been diagnosed with this cancer on April 23, 2010 i have not been treated as of yet and i really don't know anything about this cancer. I live New Orleans and since Katrina not many Doctors are familiar with this type of cancer. I was told by my Ear nose and throat doctor. Well let begin like this, i went for sinus surgery and during the surgery my doctor found the tumor. It was sent to a pathologist and it was diagnosed as this type of cancer. Only a small portion of the tumor was removed for a biopsy. I am very concerned about this once my family and friends heard this is like i have been given a death sentence. I know they genuinely care, but all i can think about is beating this. I'm 47 years old and just not ready to give up. PLEASE HELP.

SIRENAF42

brian1145 said:

diagnosed with Esthesioneuroblastoma 04/23/2010
Ive have just been diagnosed with this cancer on April 23, 2010 i have not been treated as of yet and i really don't know anything about this cancer. I live New Orleans and since Katrina not many Doctors are familiar with this type of cancer. I was told by my Ear nose and throat doctor. Well let begin like this, i went for sinus surgery and during the surgery my doctor found the tumor. It was sent to a pathologist and it was diagnosed as this type of cancer. Only a small portion of the tumor was removed for a biopsy. I am very concerned about this once my family and friends heard this is like i have been given a death sentence. I know they genuinely care, but all i can think about is beating this. I'm 47 years old and just not ready to give up. PLEASE HELP.

ENB
First, take a deep breath and dont even think of death or giving up. Cancer is a word, and all though scary, it can and has been beaten!!

I was told by my Head and Neck Oncologiest that Esthesionuerblastoma is a curable cancer. It is slow growing and when caught in time is usually treated with Radiation and/or chemo and/or surgery or a combination of all three.

Read my profile and you will see my history with how I was diagnosed and my treatments. I had surgery and radiation with no chemo. I have met people who had to do nothing but just the endoscopic surgery and others that were more advanced, had to have a more serious approach.

1 - If your ENT can not recommend someone locally that knows the treatment protocol, then he or she should refer you to a cancer hospital that does. I was treated at MD Anderson in Houston. Ask your dr for help in locating the perfect team of dr's who can treat you.

2 - Stay positive and tell your family to stay positive. Laughing and being strong is the best mental medicine for you right now. Take the time you need to accept your diagnosis and then deal with it positively.

Ask questions and share your fears with your doctor. Take someone with you to all your appointments so they can listen with and for you and ask questions as well.

Hang in there, keep us posted on how you are doing. If youd like you can email me at sirenaf40@aol.com. I will try and help as often as you need it.

Sirena

Take

overalles

SIRENAF42 said:

ENB
First, take a deep breath and dont even think of death or giving up. Cancer is a word, and all though scary, it can and has been beaten!!

I was told by my Head and Neck Oncologiest that Esthesionuerblastoma is a curable cancer. It is slow growing and when caught in time is usually treated with Radiation and/or chemo and/or surgery or a combination of all three.

Read my profile and you will see my history with how I was diagnosed and my treatments. I had surgery and radiation with no chemo. I have met people who had to do nothing but just the endoscopic surgery and others that were more advanced, had to have a more serious approach.

1 - If your ENT can not recommend someone locally that knows the treatment protocol, then he or she should refer you to a cancer hospital that does. I was treated at MD Anderson in Houston. Ask your dr for help in locating the perfect team of dr's who can treat you.

2 - Stay positive and tell your family to stay positive. Laughing and being strong is the best mental medicine for you right now. Take the time you need to accept your diagnosis and then deal with it positively.

Ask questions and share your fears with your doctor. Take someone with you to all your appointments so they can listen with and for you and ask questions as well.

Hang in there, keep us posted on how you are doing. If youd like you can email me at sirenaf40@aol.com. I will try and help as often as you need it.

Sirena

Take

Esthesioneuroblastoma
Hello:

I just found this web site and could not figure out how to post so I am replying to your email, hope you do not mind.

1. I am currently a 54 year old male living in Kentucky.
2. I was diagnosed with a Esthesioneuroblastoma skull based tumor (grade 2) in August 2003.
3. I received surgery on 9/12/2003 at KU Medical Center in Kansas City Kansas.
4. Surgery went well, I refused radiation and chemotherapy, both of my parents died of cancer and I do not believe the radiation or chemotherapy was for me.
5. I had quarterly checkups until 2008, now I go back every six months.
6. I have had no reoccurrences, feel like I have been blessed.

Thanks for letting me tag your email.

Dadasko

overalles said:

Esthesioneuroblastoma
Hello:

I just found this web site and could not figure out how to post so I am replying to your email, hope you do not mind.

1. I am currently a 54 year old male living in Kentucky.
2. I was diagnosed with a Esthesioneuroblastoma skull based tumor (grade 2) in August 2003.
3. I received surgery on 9/12/2003 at KU Medical Center in Kansas City Kansas.
4. Surgery went well, I refused radiation and chemotherapy, both of my parents died of cancer and I do not believe the radiation or chemotherapy was for me.
5. I had quarterly checkups until 2008, now I go back every six months.
6. I have had no reoccurrences, feel like I have been blessed.

Thanks for letting me tag your email.

A friend in therapy
We are from Warsaw, Poland.
My boyfriend (28yo) was recently diagnosed with Khadish C, Hyams grade III ENB.
He was operated 2.5 weeks ago and the tumor was removed with negative margins. It was a craniofacial resection using the Weber-Ferguson incision.
He is now planning the radiation therapy and it should start in around 2 weeks. Once radiation therapy is finished it will be followed by a chemo therapy due to high Hyams grade.

I read about this disease quite a lot and it seems it might be susceptible to the treatment with betulinic acid - derived from the bark of the silver birch.
Unfortunately there is no FDA accepted drug with it, but there is one in the late phase of tests for its HIV inhibiting properties. The drug is called bevirimat. The betulin and betulinic acid are a part of herbal extracts available on the market (in Poland it is sold as Betuleco). It is a supplement and apparently it can be used in conjunction with the orthodox therapy (like radiation). I am not going to write any more about it as it is not approved, but you can do some research on your own.

Generally this type of cancer is rare and has little literature. Though the therapy results show that in recent years the disease free survival as well as overall survival rates are getting better and better.

Your group is an example of that. Thank you very much for this forum.

robe68

heyxt said:

Advice Needed!
A relative of mine was diagnosed with ENB in 1997 and went thru rad/chemo. It went into remission for a number of years but now it is back.
He has completed radiation and 5 sessions of Timador for chemo but the tumor is not responding so they want to discontinue the treatment.
He is being treated at Yale (CT) and they are unsure of how to proceed.
I am trying to help by trying to get any advice I can on any treatments / hospitals / doctors that might be able to help so I can pass that information onto him.

Any Advice?
Thanks!!
Christy Kelly

Some thoughts
I am a survivor of ENB dealing with a 2nd recurrence to lymph nodes under my clavicle.
Since ENB is so rare, there is no protocol or standard of care for it. My oncologist at the University of Iowa is suggesting for me a protocol for children's nueroblastoma -since they figure ENB is most closely related to neuroblastomas. Tell your relative to ask the doctor to research the Children's oncology group #ANBL0532. Any oncologist will know how to research under that number. It is basically 6 cycles of chemotherapy, stem cell transplant from your own body, perhaps surgery, another intense round of chemotherapy then reinsertion of frozen stem cells and followed by radiation. The treatment is expected to last a year. I am in the process of getting 2nd opinions so I'll keep anyone posted who replies to this. ANY thoughts or ideas out there would be appreciated!

robe68

SIRENAF42 said:

ENB
First, take a deep breath and dont even think of death or giving up. Cancer is a word, and all though scary, it can and has been beaten!!

I was told by my Head and Neck Oncologiest that Esthesionuerblastoma is a curable cancer. It is slow growing and when caught in time is usually treated with Radiation and/or chemo and/or surgery or a combination of all three.

Read my profile and you will see my history with how I was diagnosed and my treatments. I had surgery and radiation with no chemo. I have met people who had to do nothing but just the endoscopic surgery and others that were more advanced, had to have a more serious approach.

1 - If your ENT can not recommend someone locally that knows the treatment protocol, then he or she should refer you to a cancer hospital that does. I was treated at MD Anderson in Houston. Ask your dr for help in locating the perfect team of dr's who can treat you.

2 - Stay positive and tell your family to stay positive. Laughing and being strong is the best mental medicine for you right now. Take the time you need to accept your diagnosis and then deal with it positively.

Ask questions and share your fears with your doctor. Take someone with you to all your appointments so they can listen with and for you and ask questions as well.

Hang in there, keep us posted on how you are doing. If youd like you can email me at sirenaf40@aol.com. I will try and help as often as you need it.

Sirena

Take

Staying positive
Being positive for sure helps. But you must be vigilant and proactive. There is not a single expert out there on ENB so get your scans done regularly, monitor your body for lumps or abnormalities, eat and sleep well, lower stress, and get lots of opinions before embarking on a treatment plan.

robe68

brian1145 said:

diagnosed with Esthesioneuroblastoma 04/23/2010
Ive have just been diagnosed with this cancer on April 23, 2010 i have not been treated as of yet and i really don't know anything about this cancer. I live New Orleans and since Katrina not many Doctors are familiar with this type of cancer. I was told by my Ear nose and throat doctor. Well let begin like this, i went for sinus surgery and during the surgery my doctor found the tumor. It was sent to a pathologist and it was diagnosed as this type of cancer. Only a small portion of the tumor was removed for a biopsy. I am very concerned about this once my family and friends heard this is like i have been given a death sentence. I know they genuinely care, but all i can think about is beating this. I'm 47 years old and just not ready to give up. PLEASE HELP.

Get to a major medical center
Right away. I would suggest MD Anderson in Houston TX. It's not far from you. I have never been there but based on what I've heard from a 10 year miraculous survivor in Chicago, he said MD Anderson is one of the best. I am considering a consultation there myself.

robe68

overalles said:

Esthesioneuroblastoma
Hello:

I just found this web site and could not figure out how to post so I am replying to your email, hope you do not mind.

1. I am currently a 54 year old male living in Kentucky.
2. I was diagnosed with a Esthesioneuroblastoma skull based tumor (grade 2) in August 2003.
3. I received surgery on 9/12/2003 at KU Medical Center in Kansas City Kansas.
4. Surgery went well, I refused radiation and chemotherapy, both of my parents died of cancer and I do not believe the radiation or chemotherapy was for me.
5. I had quarterly checkups until 2008, now I go back every six months.
6. I have had no reoccurrences, feel like I have been blessed.

Thanks for letting me tag your email.

Great news
You are a lucky person, my friend. I too share your feelings about chemotherapy and radiation but the techniques ARE getting better, more safe.

robe68

Dadasko said:

A friend in therapy
We are from Warsaw, Poland.
My boyfriend (28yo) was recently diagnosed with Khadish C, Hyams grade III ENB.
He was operated 2.5 weeks ago and the tumor was removed with negative margins. It was a craniofacial resection using the Weber-Ferguson incision.
He is now planning the radiation therapy and it should start in around 2 weeks. Once radiation therapy is finished it will be followed by a chemo therapy due to high Hyams grade.

I read about this disease quite a lot and it seems it might be susceptible to the treatment with betulinic acid - derived from the bark of the silver birch.
Unfortunately there is no FDA accepted drug with it, but there is one in the late phase of tests for its HIV inhibiting properties. The drug is called bevirimat. The betulin and betulinic acid are a part of herbal extracts available on the market (in Poland it is sold as Betuleco). It is a supplement and apparently it can be used in conjunction with the orthodox therapy (like radiation). I am not going to write any more about it as it is not approved, but you can do some research on your own.

Generally this type of cancer is rare and has little literature. Though the therapy results show that in recent years the disease free survival as well as overall survival rates are getting better and better.

Your group is an example of that. Thank you very much for this forum.

Suggestion
I would suggest that you tell your radiation oncologist to make sure they radiate the lymph nodes on both sides of the neck as well. I know from experience having lived through a recurrence to that area with ENB. Also, have them do concurrent radiation and chemotherapy (cisplatin or carboplatin) to enhance the radiation.

You are right about the survival rates. I'm on my 2nd recurrence but I had a different treatment plan. I'm not without hope, however.

Dadasko

robe68 said:

Suggestion
I would suggest that you tell your radiation oncologist to make sure they radiate the lymph nodes on both sides of the neck as well. I know from experience having lived through a recurrence to that area with ENB. Also, have them do concurrent radiation and chemotherapy (cisplatin or carboplatin) to enhance the radiation.

You are right about the survival rates. I'm on my 2nd recurrence but I had a different treatment plan. I'm not without hope, however.

@robe68 Re Suggestion
Thank you for the suggestion. Can you please tell me what was the treatment plan of the first therapy you had? Was it only surgery and radiation or maybe some other mix?
My friend will have radiation started next Monday and the doctor said that the chemo after this radiation is supposed to take care of any potential metastases. She also said that she would not do concurrent chemo and radiation due to the heavy toll that you need to pay for it.

Take care!
Adam

robe68

Dadasko said:

@robe68 Re Suggestion
Thank you for the suggestion. Can you please tell me what was the treatment plan of the first therapy you had? Was it only surgery and radiation or maybe some other mix?
My friend will have radiation started next Monday and the doctor said that the chemo after this radiation is supposed to take care of any potential metastases. She also said that she would not do concurrent chemo and radiation due to the heavy toll that you need to pay for it.

Take care!
Adam

For Adam
I had a fairly large tumor in the middle of my head so they did a craniofacial resection and then 33 brutal radiation treatments. There was no chemotherapy. Again, remember I had a recurrence to the lymph nodes in both sides of my neck. Since then, many hospitals have changed their protocol for treating initial ENB with radiation to the neck. I wish I would have known that before.

There are lots of ways to treat this but generally surgery and radiation is the standard of care for first ENB tumor. Concurrent chemo with radiation is used to enhance the effectiveness of radiation. I hope it goes well.

norm49

heyxt said:

Advice Needed!
A relative of mine was diagnosed with ENB in 1997 and went thru rad/chemo. It went into remission for a number of years but now it is back.
He has completed radiation and 5 sessions of Timador for chemo but the tumor is not responding so they want to discontinue the treatment.
He is being treated at Yale (CT) and they are unsure of how to proceed.
I am trying to help by trying to get any advice I can on any treatments / hospitals / doctors that might be able to help so I can pass that information onto him.

Any Advice?
Thanks!!
Christy Kelly

treatment
My husband was just treated for enb at St. Francis hospital in Hartford, Ct. His Dr. was Seth Brown (now in Farmington, Ct). We are very thankful that his ent sent us to Dr. Brown. Dr. B. was trained for nasal removal of the tumor and I would think that he would be able to help you. My husband was 6 hours in surgery, 3 days in the hospital, and 7 weeks of radiation. He lost most of his eyebrows to radiation(they haven't grown back yet) and his last treatment was 11/09. He has also lost his sense of smell, and part of taste(if it has a strong taste he can taste it), but not his appetite! Has some memory loss, he forgets to put toothpaste on the toothbrush, and mustard on his sandwich. Glad to have found Dr. Brown and his team. And would recommend them to others. Don't give up hope till you have tried all avenues. Good Luck!

alarson

brian1145 said:

diagnosed with Esthesioneuroblastoma 04/23/2010
Ive have just been diagnosed with this cancer on April 23, 2010 i have not been treated as of yet and i really don't know anything about this cancer. I live New Orleans and since Katrina not many Doctors are familiar with this type of cancer. I was told by my Ear nose and throat doctor. Well let begin like this, i went for sinus surgery and during the surgery my doctor found the tumor. It was sent to a pathologist and it was diagnosed as this type of cancer. Only a small portion of the tumor was removed for a biopsy. I am very concerned about this once my family and friends heard this is like i have been given a death sentence. I know they genuinely care, but all i can think about is beating this. I'm 47 years old and just not ready to give up. PLEASE HELP.

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!

robe68

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!

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.

alphamommy

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?

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

KS

robe68 said:

Suggestion
I would suggest that you tell your radiation oncologist to make sure they radiate the lymph nodes on both sides of the neck as well. I know from experience having lived through a recurrence to that area with ENB. Also, have them do concurrent radiation and chemotherapy (cisplatin or carboplatin) to enhance the radiation.

You are right about the survival rates. I'm on my 2nd recurrence but I had a different treatment plan. I'm not without hope, however.

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.