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weAre1's Recent CancerCompass Activity

  • weAre1 has replied to a post on the message board

    I work every weekend, so I try to have family members do something with him, tonight he went to a cancer telathon and dinner with his sister and brother in law.  We are a blended family, 2nd marriage and combined have 5 daughter!!  So usually someone is available to take him out to eat, for a walk, a drive or anything.  Sometimes we just take him to the mall for a virtual reality experience, a movie or...

    Sunday at 9:31 AM view post
    • weAre1 has replied to a post on the message board

      My husband also has been experiencing severe leg pain, little relief from oxycodone, but nuerontin has done the trick!!  And nuerontin(gabepentin) is a seizure drug as well!!  It works more on nerve pain so is beneficial with GBM and all it entails. I'm a RN as well as the wife of a GBM 4 patient.  I reccommend trying the nuerontin.  Good luck. Dawn

      Sunday at 9:24 AM view post
      • weAre1 has replied to a post on the message board

        I feel for you!!  My husband diagnosed with brain cancer in July 2017 often acts out.  He yells at me that he's dying and I don't even care.  I reassure him he's not actively dying because I'm a nurse and would know if he was dying.  He has personality changes and mood swings and while he has retired I'm still working and supporting the family.  He gets paranoid and suspicious of everyone and...

        January 01 at 10:35 AM view post
        • weAre1 has replied to a post on the message board

          My husband is experiencing Keppra rash. He started keppra 3 months ago when diagnosed with gbm multiform stage 4. I’ve got him started on clonopin for anxiety and it’s an anticonvulsant also. I’d like to see the keppra discontinued

          November 08 at 4:58 AM view post
          • weAre1 has replied to a post on the message board

            12 months without treatment is fantastic!!  My husband was diagnosed with GBM multiform 7/20/17 and Mayo Clinic told us without treatment he'd only survive 3-6  months.  So we did the brain surgery, 6 weeks of chemo/radiation, now in our month off awaiting an updated MRI.  We were told with treatment median survival is 14 months so I'm optimistic after reading your post that without treatment your...

            October 13 at 6:17 AM view post
            • weAre1 has replied to a post on the message board

              My husband, 55 diagnosed with GBM multiform in the left frontal/temporal area, also has been experiencing erectile dysfunction even with viagra.  He is also on the keppra but is off the decadron.  He's been throught the surgery, chemo and radiation.  I suspect some urine incontinence but cant quite confirm this.  Ive seen improvement with surgery, radiation and chemo with the personality changes b...

              October 09 at 6:45 AM view post
              • weAre1 has replied to a post on the message board

                My husband also has GBM grade 4, just fininshed radiation and temodar.  We are in our month off waiting for our next MRI on 10/25/17.  Diagnosed july 20th, had a left frontal/temporal resection and were able to remove 80% of the tumor.  Good luck with your treatment and keep faith.

                October 07 at 5:14 AM view post
                • weAre1 has replied to a post on the message board

                  Yes, my husband just finished chemo and radiation and is like a child!! Argues about bedtime when he's asleep in the living room , that's why I came to check posts tonight because I'm feeling frustrated!!

                  September 28 at 3:13 AM view post
                  • weAre1 has replied to a post on the message board

                    Thanks, we are just starting my husbands journey with GBM, diagnosed in July 2017, had 80% removed left frontal/temporal.  We are starting out last week of radiation and chemo tomorrow.  I feel like we are in limbo not knowing if he's responding to the chemo and radiation, trying to plan for the future, weather to retire and go on disability or try to return to work even with his deficits.  Please give...

                    September 18 at 6:59 AM view post
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                    About weAre1

                    Caregiver
                    Brain Cancer
                    After Treatment, Emotional Support, Chemotherapy

                    July 20, 2017 my world forever changed!! My husband fell in the bathroom telling me his legs wouldn't work. I called the ambulance and he was taken to the ER, after 2 hours of tests we received results; you have a brain tumor and we suspect it's cancer????. Brain surgery follows the following Monday and 80% removed. Confirmed by pathology he's got grade 4 glioblastoma??. We are doing radiation daily M-F and oral temadar 7 days a week.

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