Esthesioneuroblastoma

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.

Alison6971 said:

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 alisonhaney@hotmail.com.

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.

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

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

alphamommy said:

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

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.

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.

Amynicole0116 said:

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?