Olfactory Neuroblastoma

bqedwards1028

ENB

Hi everyone.  I was diagnosed in March with a class D ENB tumor.  The cancer has spread to several other areas of my body.  Surgery isn't an option at this point because the tumor is so big and involved with the optical nerves and some other major things in my head. So the plan is chemo to shrink the tumor and then maybe radiation and surgery.   It's now the middle of my second chemo cycle with two more to go and another PET scan to see how much things have shrunk.  Chemo has allowed me to feel somewhat normal again now that the headaches are gone and the optical issues have gone away.  I can see again, I can breathe again and I can actually smell a little bit too.  Just wanted to say hello and share a bit,  Best to you all.

cgianci

Olfactory neuroblastoma

My brother was diagnosed with ONB back in June of 2016 when he was 67 years old. He was treated by what we thought were the best surgeans at Mass Eye and Ear and Mass General Hospital. The treatment plan included surgical removal of the tumor followed up with chemotherapy and radition. While a dangerous surgery, the surgeaon assured us he had performed this surgery more than 100 tmes and always got it right. Well unfortnatley that was not the case. What should have been one head surgery with a 5-7 day post Op stay, turned out to be 5 head head surgeries , (the surgeons never closed up the dura membrane properly) over 40 days in the hospital with his body at one point going into septic shock due to a hospital acquired infection was followed up by over a month stay at two different rehab faciities. My brother was able to survive this but due to the delays in starting his chemo and radiation, he got a late start. At that point there were remains of the tumor that continued to grow and spread putting pressure on his brain. While my brother did respond to some degree with the chemo and radiation, it never stopped the the cancer from further penetrating his brain. After multiple rushes to the ER and eventual weakness from all the steroids that were prescribed to reduce the inflamation on his brain, he had a Vtech episode where he needed to be schoked twice to restart his heart. He was then put on life support, came out of that but then was too weak to take on any more treatments. He was dicharged from MGH where he spents his last days at the VA Hospital in Bedford Mass. On April 29th, 2019 my brother had enough and took his last breath. We laid him to rest yesyerday. He suffers no more and we pray he lives an eternal life of peace and happiness with the love and grace of our Lord and savior Jesus Christ.

wbcgaruss

cgianci said:

Olfactory neuroblastoma

My brother was diagnosed with ONB back in June of 2016 when he was 67 years old. He was treated by what we thought were the best surgeans at Mass Eye and Ear and Mass General Hospital. The treatment plan included surgical removal of the tumor followed up with chemotherapy and radition. While a dangerous surgery, the surgeaon assured us he had performed this surgery more than 100 tmes and always got it right. Well unfortnatley that was not the case. What should have been one head surgery with a 5-7 day post Op stay, turned out to be 5 head head surgeries , (the surgeons never closed up the dura membrane properly) over 40 days in the hospital with his body at one point going into septic shock due to a hospital acquired infection was followed up by over a month stay at two different rehab faciities. My brother was able to survive this but due to the delays in starting his chemo and radiation, he got a late start. At that point there were remains of the tumor that continued to grow and spread putting pressure on his brain. While my brother did respond to some degree with the chemo and radiation, it never stopped the the cancer from further penetrating his brain. After multiple rushes to the ER and eventual weakness from all the steroids that were prescribed to reduce the inflamation on his brain, he had a Vtech episode where he needed to be schoked twice to restart his heart. He was then put on life support, came out of that but then was too weak to take on any more treatments. He was dicharged from MGH where he spents his last days at the VA Hospital in Bedford Mass. On April 29th, 2019 my brother had enough and took his last breath. We laid him to rest yesyerday. He suffers no more and we pray he lives an eternal life of peace and happiness with the love and grace of our Lord and savior Jesus Christ.

Sorry for Your Difficult Experience

Your story reveals that one procedure not done properly can start a domino affect with a bad outcome. You have my deepest sympathy. Your brother suffered and endured a lot but he is now in a blessed heavenly home with no more suffering. God rest his soul and may the good memories of your brother continue to live on in your memories-God Bless

cgianci

wbcgaruss said:

Sorry for Your Difficult Experience

Your story reveals that one procedure not done properly can start a domino affect with a bad outcome. You have my deepest sympathy. Your brother suffered and endured a lot but he is now in a blessed heavenly home with no more suffering. God rest his soul and may the good memories of your brother continue to live on in your memories-God Bless

Thank

Thank you so much. Your words of encouragement will certainly help me and my family get through this difficult time. 

raym372

Newly diagnosed with Esthesioneuroblastoma
I have been diagnosed with Esthesioneuroblastoma in April. I went in for a nasal polyps removal, but when trying to remove, it was determined to be a tumor. They could only do a biopsy. Biopsy results showed Esthesioneuroblastoma. It is in my right nasal cavity and ethmoid sinus, and starting to extend into dura. They did not have enough tissue to determine my grade. My surgery is scheduled for next week at MD Anderson.

My doctors have determined that surgery followed by radiation of 6 weeks, as the current treatment plan. I will know more once they do the surgery and the grading.

My doctors will be doing the surgery all endoscopically. I have been told that they may do craniotomy if they do not get good margins endoscopically.

I have also read about elective neck irradiation (ENI), that might help in reducing recurrences. For those of you that had ENI, did that help in preventing recurrences, and did you have any side effects that persisted?

And did any of you also have chemo - either concurrently or after radiation?

Any suggestions and/or recommendations for the treatment and what I should be watching out for?

Ray

AliFG25

20-Year Survivor of Olfactory/Esthesioneuroblastoma

Hi Ray & All,

In 1999, I was 17 years old, actively playing field hockey, and living a normal teenage life when I was suddenly diagnosed with esthesioneuroblastoma. I had noticed that I had trouble breathing through my left nostril, and that was essentially the only indicator I had that anything was wrong. 

My local PC and a local ENT together quickly determined via scans and a biopsy that it was a sizeable malignant tumor in my left nasal cavity and sinuses, and I had a craniofacial resection of the tumor done at Mount Sinai hospital (NYC), shortly after my diagnosis. The surgery was long and the recovery difficult, but I can say 20 years post-op that it was an absolute success. Along with the physical tumor, they removed my entire olfactory nerve, the internal organs/structures and natural filters in the nasal cavities (turbinates, septum, etc.), part of my left orbital (eye) bone, and a small part of my dura (sac/lining surrounding the brain, which I think they patched up with mesh and a titanium plate), in order to be extra cautious in dealing with potential metastasis. Post-surgery, I remember the surgical team confidently conveying that felt they had removed 99.99% of the tumor/cancerous cells, which meant everything to myself and my family. 

Surgery side notes:  After my surgery, I began a series of several grand mal/tonic-clonic seizures due to trauma and scarring around my brain, which were then and now controlled by the right medications. I had several years during which I was completely off of medications but had a recent (2017) benign mass/formation (not a tumor but a cluster of blood vessels) in my left frontal lobe that was removed via an incision in my forehead, above my eyebrow. I am now on anti-seizure medications again, but I am seizure free for almost a year now.  I also had a brief reconstructive surgery about 6 months out from the original resection, which was done to reshape my nose, as they had to remove certain bones/cartilage that gave it it's original structure...

A month or so after the craniofacial resection, I had a total of 4 weeks of combined radiation therapies:

1) General (will find out more specifics and more official terms for, if anyone would like to know) radiation to my neck and thyroid to prevent any possible metastasis

2) Proton-photon beam radiation (very precise to protect surrounding areas, like the eyes, pituitary gland, etc.) to the left side of my face/sinuses/nasal cavities where the tumor had been

The general radiation was done at Massachusetts General Hospital (MGH in Boston). The proton treatments were done at the (then experimental) Harvard Cyclotron, the technology/equipment for which has now been transferred to the Francis H. Burr Proton Therapy Center at MGH. My original radiation oncologist, though, is the one healthcare professional I will always default to for medical advice (especially ENB-related), and he has trasferred to a different proton therapy center in Hampton, Virginia.

I will post again when I find out the exact grade, but I know that I had a lower-grade tumor, as it had grown out of my nasal passage into my sinuses but hadn't extended into my brain, any lymph nodes, thyroid or other parts of my body. This may have been one of the determining factors in why I did NOT personally have any chemotherapy. I do know that the doctors told me that the additional benefits of chemo, in my particular situation, were not significant enough to add chemo to the regimen.

Post-surgery, I lost my sense of smell, but that result can vary some. In my particular situation, every now and then I'll have faint hints of "smells" but nothing substantial or really recognizable, and yet it's absolutely a blessing at times and is certainly the sense one would probably want to lose if you had to choose one (as opposed to sight, hearing, touch, etc.). Plus, I still have my taste buds (sweet, sour, spicy, salty, bitter, even fat taste buds), which is definitely a blessing when it comes to eating good food.

I have since had many latent radiation effects, such as tear duct scarring, hypothyroidism, hyperpituitarism (low estrogen/testosterone/progesterone, high prolactin, etc.), constant post-nasal discharge (I irrigate my sinuses daily), seasonal and dust mite allergies that become more apparent over time, other scarring in the face/nose/mouth, compression/recession of the reconstructed part of the eye bone (minimal), slight bone loss over time, etc.. The latent effects are for the most part controlled by daily medications, hormone replacement pills, daily sinus irrigation, a healthy diet, exercise, and vitamins/supplements. 

With all that said, I am grateful to have come out of it preserving what I still have, which I greatly attribute to the types of treatment, doctors and general support system that I had. Although my medical experiences have certainly presented me with my fair share of complications and I have had to stay on top of doctors appointments, diet, exercise, etc, I am every day grateful to have survived the cancer at all. I am now 20 years cancer-free.

I could go on all day about the angels who have come in and out of my life through these years of medical challenges. Instead, please reach out to me if you would like any more details about what I've been through. I would be doing a disservice to you all if I didn't share my experience. I have been seeking out some form of survivor support for some time, but now that I have (just today, finally) discovered this CSN discussion board, I am more inclined to share my specific story in the hopes that it might bring guidance to others facing this cancer, especially as it's such a rare one.

In the meantime, I send you all hope, love and faith in the challenges ahead.

My Best,

Ali  

EllenG.

AliFG25 said:

20-Year Survivor of Olfactory/Esthesioneuroblastoma

Hi Ray & All,

In 1999, I was 17 years old, actively playing field hockey, and living a normal teenage life when I was suddenly diagnosed with esthesioneuroblastoma. I had noticed that I had trouble breathing through my left nostril, and that was essentially the only indicator I had that anything was wrong. 

My local PC and a local ENT together quickly determined via scans and a biopsy that it was a sizeable malignant tumor in my left nasal cavity and sinuses, and I had a craniofacial resection of the tumor done at Mount Sinai hospital (NYC), shortly after my diagnosis. The surgery was long and the recovery difficult, but I can say 20 years post-op that it was an absolute success. Along with the physical tumor, they removed my entire olfactory nerve, the internal organs/structures and natural filters in the nasal cavities (turbinates, septum, etc.), part of my left orbital (eye) bone, and a small part of my dura (sac/lining surrounding the brain, which I think they patched up with mesh and a titanium plate), in order to be extra cautious in dealing with potential metastasis. Post-surgery, I remember the surgical team confidently conveying that felt they had removed 99.99% of the tumor/cancerous cells, which meant everything to myself and my family. 

Surgery side notes:  After my surgery, I began a series of several grand mal/tonic-clonic seizures due to trauma and scarring around my brain, which were then and now controlled by the right medications. I had several years during which I was completely off of medications but had a recent (2017) benign mass/formation (not a tumor but a cluster of blood vessels) in my left frontal lobe that was removed via an incision in my forehead, above my eyebrow. I am now on anti-seizure medications again, but I am seizure free for almost a year now.  I also had a brief reconstructive surgery about 6 months out from the original resection, which was done to reshape my nose, as they had to remove certain bones/cartilage that gave it it's original structure...

A month or so after the craniofacial resection, I had a total of 4 weeks of combined radiation therapies:

1) General (will find out more specifics and more official terms for, if anyone would like to know) radiation to my neck and thyroid to prevent any possible metastasis

2) Proton-photon beam radiation (very precise to protect surrounding areas, like the eyes, pituitary gland, etc.) to the left side of my face/sinuses/nasal cavities where the tumor had been

The general radiation was done at Massachusetts General Hospital (MGH in Boston). The proton treatments were done at the (then experimental) Harvard Cyclotron, the technology/equipment for which has now been transferred to the Francis H. Burr Proton Therapy Center at MGH. My original radiation oncologist, though, is the one healthcare professional I will always default to for medical advice (especially ENB-related), and he has trasferred to a different proton therapy center in Hampton, Virginia.

I will post again when I find out the exact grade, but I know that I had a lower-grade tumor, as it had grown out of my nasal passage into my sinuses but hadn't extended into my brain, any lymph nodes, thyroid or other parts of my body. This may have been one of the determining factors in why I did NOT personally have any chemotherapy. I do know that the doctors told me that the additional benefits of chemo, in my particular situation, were not significant enough to add chemo to the regimen.

Post-surgery, I lost my sense of smell, but that result can vary some. In my particular situation, every now and then I'll have faint hints of "smells" but nothing substantial or really recognizable, and yet it's absolutely a blessing at times and is certainly the sense one would probably want to lose if you had to choose one (as opposed to sight, hearing, touch, etc.). Plus, I still have my taste buds (sweet, sour, spicy, salty, bitter, even fat taste buds), which is definitely a blessing when it comes to eating good food.

I have since had many latent radiation effects, such as tear duct scarring, hypothyroidism, hyperpituitarism (low estrogen/testosterone/progesterone, high prolactin, etc.), constant post-nasal discharge (I irrigate my sinuses daily), seasonal and dust mite allergies that become more apparent over time, other scarring in the face/nose/mouth, compression/recession of the reconstructed part of the eye bone (minimal), slight bone loss over time, etc.. The latent effects are for the most part controlled by daily medications, hormone replacement pills, daily sinus irrigation, a healthy diet, exercise, and vitamins/supplements. 

With all that said, I am grateful to have come out of it preserving what I still have, which I greatly attribute to the types of treatment, doctors and general support system that I had. Although my medical experiences have certainly presented me with my fair share of complications and I have had to stay on top of doctors appointments, diet, exercise, etc, I am every day grateful to have survived the cancer at all. I am now 20 years cancer-free.

I could go on all day about the angels who have come in and out of my life through these years of medical challenges. Instead, please reach out to me if you would like any more details about what I've been through. I would be doing a disservice to you all if I didn't share my experience. I have been seeking out some form of survivor support for some time, but now that I have (just today, finally) discovered this CSN discussion board, I am more inclined to share my specific story in the hopes that it might bring guidance to others facing this cancer, especially as it's such a rare one.

In the meantime, I send you all hope, love and faith in the challenges ahead.

My Best,

Ali  

Olfactory/Esthesioneuroblastoma survivor

Hello Ali,

Thank you for sharing your story here.  I'd love to keep in touch with you and learn of your progress.  I posted earlier in this thread about my situation, but today I am happy to say I've had my first post-radiation MRI and it looks all clear.  I hope to have the success you have had in staying healthy all these years, an I congratulate you in getting through the worst of it and maintaining your health through the challenges that have come up.  If you'd care to read my story it is in this thread, and I'd be thankful to hear from you in order to keep in touch and follow your progress.

Thanks again for posting your uplifting history.

Ellen