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Caregiver for Oligodendroglioma - need an idea of what to expect and resources

immamak
Posts: 2
Joined: Jul 2015

My husband was diagnosed with an oligodendroglioma in Feb 2014. He went through radiation and the tumor shrunk. In January 2015, it came back with a vengance and the doctors started him on Temodar. As of June 2015, the MRI shows no new tumor growth and any radiation neurocrosis has cleared up. However, two weeks ago my husband started saying thing that did not make sense. He also started not recognizing me. I called up the neuro oncologist to see if the tumor was growing. They did another MRI...nothing. No change. They attributed his confusion to seizures as he has had them in the past, but did not do an EEG to confirm he was having seizures. They put him back on anti seizure meds, but he is now more confused than ever. I took him into the ER last night because he was having nonstop nausea and while they were giving him saline through his port, he deaccessed it himself. When I asked why, he said he was, "bored and had nothing better to do." We live in Alaska, but are in Washington for the next two weeks. Alaska is our home, but we have been down here visiting family. I do not know if they will even let us on the plane to go home, and I have no resources down here to help me. His family doesn't know any resources either. This is a new disease for me, his family, and my family...and I would appreciate any advice and help that anyone can give! I feel very lost right now.

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