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Thread: Introduction

  1. #1
    Newbie New User
    Join Date
    Oct 2018


    My hubby had symptoms of a brain tumor for months but neither of us thought much of it (having never encountered one. He was very dizzy, shaky and would just “zone out”. So one night in late March he spills an entire soda on the living room floor. I’m on my hands and knees cleaning it up and ask him to stand up so I could get under his chair. He stood up and immediately fell down, his butt on my wrist. It was a nice clean break, said the Dr in the ER. He didn’t want to go to ER so I had appt to put a permanent cast on the next morning. When I got home I got him dresses and took him to ER. They ran a CT scan and found a “mass” on his brain. He was quickly transferred to Palmetto Richland, about 45 min away. Golf ball sized tumor, GBM Grade IV. They have an excellent Neurology floor and Dr said he got all the tumor. They give him Temador and radiation. Finally he came home with a clean bill of health. His 3 month MRI was clean and we had another in Sept, in prep of an Oct appt with surgeon. Then he had had a seizure and was put on Keppra 500 mg twice a day. Soabout 2 weeks ago he fell and I called an ambulance to our local hospital. They couldn’t see anything clearly on the CT scan so off he goes to Palmetto Richland again. I went over the next morning and the Dr explained the tumor had grown back and it was in both lobes, so it was inoperable. He sets up an Oncology appt in our town. Basically now he is receiving Avastin every two weeks with another MRI in 3 months.

    I thought we were going well but he fell a couple of days ago, stepping over cat toys and I helped him up. This morning he woke me up at 4 a.m., fully dressed to tell me we were supposed to go to the movies then to a little diner for breakfast. He was insisting we were going to miss the movie and we were late for breakfast. It took me 45 minutes to get him undressed and back in bed. This on top of calling me in to the bathroom to see that he “leaked” all over the bathroom rugs. Needless to say I was washing rugs at 10:30 last night.

    I’m getting so stressed out that my psoriasis is flaring and I feel helpless. I don’t know what to do for him. I am a realist and know this is an aggressive form of cancer, I know the stats and we have discussed this. I guess I’m just not ready for it to come on so quickly.

  2. #2
    Super Moderator Top User
    Join Date
    May 2011

    Sorry to hear you are both going through this. Have you seen a neuro-oncologist yet - not just an oncologist?

    I don't know how far Duke in NC is for you? It might be worth going for a 2nd opinion - especially on the inoperable part. Somewhere like Duke has access to more cutting edge treatments.

    Try to be patient and also be aware Keppra can lead to mood changes - including rage.

    Glioblastoma IV, frontal lobe - Dx March 2011. Treated with standard Stupp protocol
    Recurrence August 2016 (at 5 years PFS). Surgery August 2016, rechallenge with TMZ with immunotheraphy (nivolumab)


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