Esthesioneuroblastoma

dmk66

How many people had reoccurences of their cancer after treatment. Whether if was surgery, radiation or chemo?

YZ

dmk66

Hi dmk66,

For the past 21 years, I've had 5 recurrences of ENB, tumor removed endoscopically. Fifth recurrence this year, no past radiation or chemo. Currently, trying to decide whether or not have followup radiation.

 

YZ

dfs56

3 times

Hi,  I had my first ENB removed in 2014.  The second surgery in 2016. The last August 2017.  This time the head and neck board is recommending radiation, which I will begin next week.  DS

 

 

 

MissBlueEyes4Life

I'm curious, did any of you

I'm curious, did any of you have your olfactory nerve removed? I did as well as having chemo and radiation. 4 months out, first pet was clear. Let's keep it that way!

Dailybread

dfs56 said:

3 times

Hi,  I had my first ENB removed in 2014.  The second surgery in 2016. The last August 2017.  This time the head and neck board is recommending radiation, which I will begin next week.  DS

 

 

 

Radiation Treatment Questions

Hi DFS:  I too have ENB with three surgeries behind me the last being January 2018.   ENT is recommending radiation.  How did the radiation therapy go for you?  Can you share with me side effects?  Did you have your neck radiated or only your sinus areas?

 

Thanks,

Dailybread

susanherz

Endoscopic surgery, removal of smell nerves, radiation

Hi All. I will try to answer (from my experience) some of the questions asked in the postings for esthesioneuroblastoma.  I was diagnosed in April of 2017 so I am new to this.  I am being treated at the University of Michigan and I am very pleased with the facility and my doctors. I had surgery (more than one but that's a long story for another time) in June of 2017 and began radiation in late July. I received six weeks (30 treatments) of (IMRT) intensity modulated radiation therapy. My surgeons were able to remove my tumor (which was also above the dura into the brain) endoscopically and obtain clear margins. My smell nerves were also removed. The radiation was recommended to eliminate any potential microscopic cells that might have remained. My lymph nodes were also radiated as a precaution since that is where this type of cancer "tends" to reoccur. 

I completed my radiation treatments on September 10th of 2017. Since the entire area of my head and neck was radiated, I had lots of side effects. I had hair loss across the back nape of my neck as well as my eyebrows, eyelashes and hair in my nose (all of which is growing back). I had sores on the roof of my mouth which have healed, however, the inside of my mouth is easily burned by hot liquids and hot food. I had some red blotches on my skin which have healed. I no longer smell anything and can only taste salty, sweet and sour (that is permanent). This was not a side effect of the radiation but a result of having my smell nerves removed during surgery.  I did not have any saliva after radiation, but that is slowly coming back. Still sometimes difficult to swallow and there are certain foods I can't eat because they are too dry. I have to rinse my nasal cavities with saline solution several times a day. I'm not sure if I will always have to do that or not. My vision has changed and I can no longer wear contacts to drive. My doctor tells me that if that doesn't correct itself in a couple of years, I can have a procedure to correct it. I had some fatigue but that has slowly resolved itself. I also suffered from "phantosmia" during radiation which was an awful smell that was constant. I was prescribed and anti-seizure drug (Gabapentin) and have since come off of that drug and the awful smell has subsided considerably and is only occasional now. Most all of the side effects of radiation will slowly heal and correct. I'm told it depends on the individual. I have truly been blessed through this whole process. I go for a follow up MRI the middle of March. Fingers crossed that it comes back clear.

I'm sure most of you will understand it when I say that this diagnosis has changed my life in positive ways that I call blessings and miracles. I keep you all in my prayers. We can beat this thing.

 "Life is good, indeed!"

 

Lucy626

susanherz said:

Endoscopic surgery, removal of smell nerves, radiation

Hi All. I will try to answer (from my experience) some of the questions asked in the postings for esthesioneuroblastoma.  I was diagnosed in April of 2017 so I am new to this.  I am being treated at the University of Michigan and I am very pleased with the facility and my doctors. I had surgery (more than one but that's a long story for another time) in June of 2017 and began radiation in late July. I received six weeks (30 treatments) of (IMRT) intensity modulated radiation therapy. My surgeons were able to remove my tumor (which was also above the dura into the brain) endoscopically and obtain clear margins. My smell nerves were also removed. The radiation was recommended to eliminate any potential microscopic cells that might have remained. My lymph nodes were also radiated as a precaution since that is where this type of cancer "tends" to reoccur. 

I completed my radiation treatments on September 10th of 2017. Since the entire area of my head and neck was radiated, I had lots of side effects. I had hair loss across the back nape of my neck as well as my eyebrows, eyelashes and hair in my nose (all of which is growing back). I had sores on the roof of my mouth which have healed, however, the inside of my mouth is easily burned by hot liquids and hot food. I had some red blotches on my skin which have healed. I no longer smell anything and can only taste salty, sweet and sour (that is permanent). This was not a side effect of the radiation but a result of having my smell nerves removed during surgery.  I did not have any saliva after radiation, but that is slowly coming back. Still sometimes difficult to swallow and there are certain foods I can't eat because they are too dry. I have to rinse my nasal cavities with saline solution several times a day. I'm not sure if I will always have to do that or not. My vision has changed and I can no longer wear contacts to drive. My doctor tells me that if that doesn't correct itself in a couple of years, I can have a procedure to correct it. I had some fatigue but that has slowly resolved itself. I also suffered from "phantosmia" during radiation which was an awful smell that was constant. I was prescribed and anti-seizure drug (Gabapentin) and have since come off of that drug and the awful smell has subsided considerably and is only occasional now. Most all of the side effects of radiation will slowly heal and correct. I'm told it depends on the individual. I have truly been blessed through this whole process. I go for a follow up MRI the middle of March. Fingers crossed that it comes back clear.

I'm sure most of you will understand it when I say that this diagnosis has changed my life in positive ways that I call blessings and miracles. I keep you all in my prayers. We can beat this thing.

 "Life is good, indeed!"

 

Olfactory neuroblastoma info

My husband just had surgery for this and will begin radiation and chemo .Any info or help you can offer to get us through the 10 weeks of treatmeant would be appreciated . Hope you are doing good .Thanks 

Bruce C1

esthesioneuroblastoma

Hi everyone, im recently diagnosied with Esthesioneuroblastoma and someday this week i will be schedule for operation then radiation. im really new to this but if anyone would me reply with any previous experience what to expect after operation etc i would be appreciate it. thank you

HobbsDoggy

Radiation

Had radiation and chemo for neck so cannot say about your exact treatment.  The first part of treatment went well.  Toward the end it was rough.  Needed a feeding tube as I could not really get food down, etc, but then my radiation was on the neck, so that may not be a problem at all for you.  The chemo did cause nausea.  That was bad towards the end, but not horrid.  I resisted pain medication, should have started it a little earlier.  The two weeks after radiation stopped were the worst.  A total of four weeks in bed most of the time.  Lost a lot of weight.  Then slowly, but surely I started to improve.  I did not see it at first, but looking back on it the improvement was there.  In about a month I was able to function mostly on my own.  Not sure that since mine was neck that yours will be anywhere close.

Three months later I was able to work part time and four months later even take a vacation. They had a counselor at the radiation clinic who I found quite helpful.  She had been though the drill and was able to help me navigate the process and also offered a lot of really good mental health ideas.  There was also a cancer support group that I joined after treatment that was very helpful.