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life with oligodendroglioma

elizabeth emison's picture
elizabeth emison
Posts: 2
Joined: Oct 2012

anyone out there with oligo?

AshleyWF's picture
Posts: 46
Joined: Aug 2011

Hi Elizabeth,

My fiance was diagnosed last year with grade II Oligodendroglioma in the left temporal section of his brain. There are a few others on here as well who I reached out to when he was first diagnosed.

Should you have any questions or just want someone to speak to, I'm here!


BenLenBo's picture
Posts: 145
Joined: Feb 2012

I am a survivor, and will be for probably the next 10,20 30 or more years according to my oncologist and radiologist. You can read my post to get more information. But, my treating facilities are Roger Maris, John Hopkins and Mayo. I have the 1p19q deletions. Best to you, sorry you have to go through this. Just remain positive and don't give up. Benjamin

Posts: 1
Joined: Nov 2012

Hi, my husband was dx. with left frontal lobe Oligo grade 2 with deletions last spring.

It has been a rough 7 months to say the least.

Posts: 16
Joined: Mar 2011

I have an Oli grade 2, right occipital/parietal lobes. Diagnosed and surgery 90% resection Nov 2010. Radiation Spring 2011 and 8 Temodar rounds. Stopped due to stable scans and I kept getting sick. Just watching and waiting now. Trying to live without being consumed by an uncertain future. Some days it's easier than others.

Posts: 1
Joined: Dec 2012

My wife has oligodendroglioma, she's almost 39 y/o next month. She was first diagnosed in 2003 with an inoperable grade 2 astrocytoma. She did 7 weeks of radiation and the tumor shrunk significantly & was in remission until 2009. Then one of her scheduled MRI's showed new growth, so they went back in for another biopsy & now they say it's an oligo. They started her on Temodar & she took that for about 4 months 5 days on 28 off, but she was in that small percentage of people that are allergic to the temodar "very bad skin reaction" so they took her off of it. Then they had her taking hydroxyurea & gleevec. She was taking this for about 5 months, after the first 2 months her mri showed shrinkage, and we & her doctor was ecstatic, but in the next mri the tumor had grown again significantly & her dr. thinks it may have upgraded itself to a grade 3 from the size of the growth.  So now they are going with the liquid chemo. She had her port put in this past Friday & is going to start Jan 7th with carboplatin & avastin every 3 weeks. Hopefully this stuff will help? We are not looking forward to her next MRI but are staying hopeful. thanks for listening.... Rob 

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