Just Diagnosed

Tammy: I was diagnosed with an esthesioneuroblastoma on Sept. 10, 2001 after my first doctor treated me twice for a "broken blood vessel" because I was experiencing intermittent bloody noses. When I began to feel something in my right sinus, I got a second opinion. That DR removed what he thought was a nasal polyp, however, the pathology revealed the esthesio. I was told that it was 2 cm in size. If was then referred to the Dept. of Otorhinolaryngology at the University of PA. I underwent another surgery to remove the middle and superior turbinates as well as the cover of the septim. Six additional biopsies were taken, all of which were benign!!! The "tumor board" at HUP recommended that I have 7 1/2 weeks of radiation therapy, which I did. I continue to be seen every three months by the surgeon and the radiation oncologist, and they are both pleased with my progress. Knock on wood, I have not had a reoccurence. My only complaint is that my sinuses don't work right any more. My sense of smell has diminished considerably and I'm prone to sinus infections. Other than that, I'm glad to be alive. Please keep me posted on your progress.

Rik said:

I was DX with an esthesioneuroblastoma last May 2003. I am 26 years old and just finished my Peace Corps service in the Philippines. The Philippines is where I actually was when I had a seizure and was immediately sent home for evaluation. The tumor grew into my brain and was pressing on it when the seizure took place. I have had 2 brain surgeries and 1 sinus surgery. The esthesioneuroblastoma grew from my sinuses to my brain at a rapid rate after the first surgery and another surgery was needed. I have recently undergone radiation and just started my first of 4 cycles of chemo last week.

I am interested in hearing about alterative treatments that you all may have been involved in. In San Diego there is a place called the Optimum Health Institute (Optimumhealth.org). A wellness center, where they instruct on detoxifying the body along with the eating of raw foods for better health and I am planning on visiting there.
I've been in some what of a denial since the DX but am now preparing to fight this cancer at what ever grounds necessary. If anyone has any tips or anything to say please email me at rikucla@yahoo.com. This is the first time I have looked into a support group and I believe it can be a positive endeavor.
Thanks
Rik Weiss

Rick,
My wife (who happens to be Philipino) has been fighting ENB for 18 years now. Her 1st surgery included brain and sinus surgery. She has had 4 more surgeries, radiation and chemo. This summer her tumor recurred and was inoperable. She is now taking a new drug orally (with virtually no side effects) called Gleevec. Her MRI results showed that the tumor has remained pretty much unchanged in the 3 month trial period, which is good. This is how we found out about the drug. If you have some tumor tissue left over from a biopsy ask you Dr. to have immuno-histological tests done on the tumor sample. If the tests come back positive for CKIT you may be eligible for treatment with Gleevec. Hope you have good insurance because the drug costs over $2,000.00 for a 30 day supply. If you want more info drop me a note at john5937@cox.net.
good luck, some days are good some are bad, keep fighting
John

MPat said:

Tammy: I was diagnosed with an esthesioneuroblastoma on Sept. 10, 2001 after my first doctor treated me twice for a "broken blood vessel" because I was experiencing intermittent bloody noses. When I began to feel something in my right sinus, I got a second opinion. That DR removed what he thought was a nasal polyp, however, the pathology revealed the esthesio. I was told that it was 2 cm in size. If was then referred to the Dept. of Otorhinolaryngology at the University of PA. I underwent another surgery to remove the middle and superior turbinates as well as the cover of the septim. Six additional biopsies were taken, all of which were benign!!! The "tumor board" at HUP recommended that I have 7 1/2 weeks of radiation therapy, which I did. I continue to be seen every three months by the surgeon and the radiation oncologist, and they are both pleased with my progress. Knock on wood, I have not had a reoccurence. My only complaint is that my sinuses don't work right any more. My sense of smell has diminished considerably and I'm prone to sinus infections. Other than that, I'm glad to be alive. Please keep me posted on your progress.

On 23 July 2004 I was diagnosed with esthesioneuroblastoma at the Cleveland Clinic in Ohio. It was determined that the cancer was grade one and had not metastasized. However, a final assessment about the extent of a tumor could only be made during surgery. I did undergo endoscopic surgery on 26 August -- a 7/ 1.2 hour long ordeal. The otolaryngologist performed the procedure and a neurosurgeon was on call in case the tumor had invaded the brain -- in that case, he would have performed a craniotomy. Luckily, that was not necessary. The tumor was removed from below, inside the nose. However, because of the tumor's position and the surgeon's search for negative margins, he inevitably made a hole in the area that separates the sinuses from the brain and cerebral fluid started leaking. After he repaired the hole, they made another hole in my spinal cord and drained me every hour for seven days, hooked to a "faucet" that worked to re-establish the balance of the spinal fluid flow.
During a post-op visit with the surgeon three weeks later, the issue of a second surgery came up to eliminate scar tissue that had formed in the sinuses. I had another operation on 14 October. I am also going to undergo radiation therapy, starting on 2 November, a non-traditional approach by the name of Novalis. I would like to know if anybody out there is familiar with this kind of radiation therapy.
My symptoms went undiagnosed for 19 months until I was misdiagnosed before I sought a second opinion at the Cleveland Clinic. While I was in Italy, at the end of 2002, I started noticing breathing difficulties in my right nostril. I am an allergy sufferer, therefore I didn't think much of it. The symptoms didn't clear when I visited LA for extended periods of time neither did they improve when I moved to Oberlin, OH. In December 2003, I saw a general practitioner who told me I had a sinus infection and gave me antibiotics. The symptoms persisted. I didn't get to an ear/nose/throat specialist until June 2004 and finally got my sinuses scanned. Got a nonchalant response -- book an OR, remove that polyp from your nose, biopsy it, end of story.
I was not convinced and sought a second opinion at the Cleveland Clinic and the doctor who saw me, Pete Batra at the Head&Neck Institute, specializes in nasal tumors and endoscopic surgery. He did an endoscopy right there in the office and made his diagnosis before seeing the path report. Needless to say, I was shocked by the possibility that this growth could be malignant.
To be continued ....