Esthesioneuroblastoma

SIRENAF42 said:

Esthesionueroblastoma
I was diagnosed with Ethesio... in Jun 2008, underwent suregery to remove the tumor and then 6 weeks of radiation at MD Anderson in Houston TX. My last treatment was Oct 1 2008. My 30 day check up was in NOv and my drs were very pleased with the results. I go back in March for my next check up... I am sooo excited that I found someone else with my type cancer.. I cant wait to communicate with you.
Sirena

pinkbear said:

Esthesioneuroblastoma
Thank you for sharing your story. My husband was just diagnosed with an ENB, stage C, grade 1-2, which has gone into the cranial cavity. After our search and careful discernment, we have decided on UPMC as well. We share in the frustration that treatment options and data are uncertain due to its rarity. But hearing your story offers hope. We wish you well. If you have an words of insight for us, we would appreciate hearing from you. If anyone else has used UPMC, we would love to hear your experience.

PBailey said:

Esthesioneuroblastoma
Hello, I was diagnosed in October 2008 with early stage esthesioneuroblastoma. I underwent Endoscopic surgery in Pittsburgh (UPMC) in Nov and have just completed post op radiation using the CyberKnife on Friday 3/6/09. I now will have follow-up MRI's & chest x-rays every 90 days for the next few years and annually after that. I had never heard of this cancer and finding treatment options can be somewhat hard since there is no real "expert" on this cancer. I feel blessed since this was caught early and the procedures I choose were with little side effects, short recovery times and excellent prognosis' on the horizon.

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

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.

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.

jimwatson723 said:

I've Survived Since Nov 2005
Wow. Just ran across this board today. I was first diagnosed in Nov 2005 after undergoing a "routine" sinus scraping to remove a chronic infection. After hitting a growth in the sinus cavity the ENT took the steps he deemed necessary to control the profuse bleeding. Testing of the tumor revealed Estesioneuroblastoma. For such an extremely rare cancer, I am surprised to find all these posts here today. Once identified (was misdiagnosed the first time) I had 6 weeks of radiation. Then, scans every 6 weeks, which dwindled to every 3 months, then every 6 months.

In November 2008 I began having symptoms of a tingling and/or numb left arm. Long story short, tests revealed enlarged nodes in the left neck. When antibiotics failed to address the issue I went in for a neck dissection with Dr. Guy Pettruzelli at Rush University in Chicago. During the surgery he found that the tumor (identified as the same olfactory neuroblastoma) had broken through the nodes and had begun invading surrounding muscle tissue. After a minimal healing period I went in for another 6 weeks of radiation targeted around the neck and chest, which completed in May 2009.

Now preparing for the regular scans, which begin again next month.

namaste said:

HOPE
My husband(esthesioneuroblastomaectomy 8/06) and I attended the WEEKEND OF HOPE for the first time this year....an annual event every May in Stowe,Vermont for cancer survivors. First time attendees and a guest attend free the first year. Workshops are abundant. As we joined in at the closing ceremony atop the mountains adjacent to the Trapp Family Lodge it was with great restraint that I did not break out into...THE HILLS ARE ALIVE WITH THE SOUND OF MUSIC AND SO ARE WE ! Cancer is part of our journey not our destination. NAN