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Olfactory Neuroblastoma - 40 yo Woman - Seeking advice/connection


I’m a 40 yo female with (rare) diagnosis of right nasal cavity esthesioneuroblastoma or olfactory neuroblastoma, preliminary Hyams Grade 3, presumed Kadish Stage A.  On April 9th I underwent a craniotomy by an expanded endoscopic approach for resection of tumor. Negative margins were achieved. Plan for radiation therapy to follow.

Any one have similar diagnosis of ONB? I’m looking for any general advice or support? Has anyone used proton beam therapy instead of IMRT for radiation?

ptbabe's picture

The journey

today I got devastating news my husband has pancreatic cancer I can’t eat or sleep I just want to curl up and not move all or dreams are shattered 

blessme's picture

Lung cancer

I have small non-cell cancer of my lungs. Just found out from a CT on first of March going in for test this Thursday the 18th. I have spoke to a surgon and he wants to take out lower left lobe. I am 68 yrs old and quit smoking last year July the 1st. My husband passed away Dec 12 of last year after 37yrs. of marriage.All of this is so much and I really do not know what to do.

Can anyone help me with expectations on Cisplatin with 5FU?

I have finished 7 weeks of radiation, with 3 concurrent doses of Cisplatin. I have been prescribed 3 more "follow-up "seek and destroy"" dosages of Cisplatin with 5 FU.

I handled the radiation and Cisplatin reasonably easily. But, they're telling me the follow up doses are dispensed over a 4-day period. A "ball" goes on my belt on a Monday, and slowly delivers Cisplatin and 5FU into my blood port.

I'm wanting to know how people handled and dealt with this treatment. Any help would be very much appreciated. Thank you!



Diagnosed today. Questions.




Celebrating 22years cancer free of Adult onset PNET

Today I am celebrating 22 years free of a medistatic Primative Neuroectodermal Ewings Sarcoma.

I was diagnosed at the age of 47 with metastatic disease. Followed by radical excision, 2. 1/2 years of treatment that included multiagent chemo and radiation.

Today, as every year, I reflect on my survival. I always wonder how many more adults diagnosed with PNET are survivors like me. I wonder if there are any, if they suffer the long lasting side effects of the treatment, such as I do. 

I am just glad to be alive and have beat the odds for survival. 

It's In My Blood

I have an existing blog that may be found at itsinmyblood.blog.  Please visit it.

scarlett21's picture

It's getting closer...

I did the ovarian today freezing procedure a couple of days ago. One of the incisions still hurts but I'm getting better. I get admitted to Sloan on Friday to start the transplant process. It's so close. I don't want it to be here. At least I get my own room. They said I can have visitors so that's a good thing.

I got a new phone and I finally activated it today. I haven't taken any pictures with it. I'm hoping it's better than my old phone (which had a piece of **** camera). 

Forherself's picture

My story.

December 10, 2017 approximately, I had Uterine bleeding.  I had been menopausal for about 10 years.  I was 66.   I had what I describe as a light period, bright red light bleeding for about 5 days.  It was right before Christmas and I was concerned.  I am an RN and knew what this could be.  I went to my Family doctor, who was wonderful.  She immediately ordered a pelvic US which I had the following week.  I waited until after Christmas to see her.  I hd the US in Jan which showed several things.  A mass on my ovary, a polyp I believe on the outside of my uterus.


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