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supervivencia's Recent CancerCompass Activity

  • supervivencia has replied to a post on the message board

    Blessings to you. You can always be proud of how you handled a very difficult time. We cry with you. Kathryn

    September 02, 2011 view post
    • supervivencia has replied to a post on the message board

      Alas...my dear 54 year old husband, Andy (GBM dx.July 2010)...who is in hospice now, is on a subcutaneous dose of 24 mgs. Decadron per day- equivalent to 32 mgs. in pill form!!! At diagnosis he started on 2 mg. and has had to build it up. Decadron is like heroin--it gives energy, which is good to a point , but the body builds up a tolerance/gets addicted to it, and doses have to increase to catch...

      August 26, 2011 view post
      • supervivencia has created a new message board discussion

        NOW I get it!!! "monster" "cruel" "warriors" . That vocabulary seemed a bit harsh to me --until almost 3 weeks ago, when I finally had to admit my dear husband to a hospice. At first it was supposed to be for "respite" , but apart from one shift of nursing ning nongs who think discharging Andy would be a good idea...!!!!...the treatment "plan" seems to be shifting to palliative really quickly. He ...

        August 19, 2011 view discussion
        • supervivencia has created a new message board discussion

          This is the day "they" said we would never see. One year ago today Andy had a seizure- completely out of the blue, and our lives changed on a dime. "They" said he would live less than a year. GBM right temporal lobe. Inoperable they said. Two brain surgeries later,  he is a changed man. Physically weaker, especially on the left side. Vision impaired, cognitively challenged in some ways. Short term memory loss....

          July 25, 2011 view discussion
          • supervivencia has created a new message board discussion

            Decadron. One big, fat mixed blessing this one. My husband Andy has GBM ...almost a year now...right temportal lobe...2 surgeries....  Over the course of the year he's had literally blinding headaches. So of course, the dex.  He started on 4, then , then 8, 12, 16, 20, mgs.  Now he's back to 16 after the second surgery.  It definitely adds in a whole new dimension of personality change. Somet...

            July 10, 2011 view discussion
            • supervivencia has created a new message board discussion

              There are pros and cons to the Canadian Health Care system. One of the big pros is that we are lucky enough to live in Toronto, near some of the best care in the country. My husband has received two brain surgeries, probably 10 MRIs, radiation, Temezolomide chemo, CCNU chemo, a short trial study chemo, many office appointments, a couple of hospital stays...all under the government health care package from excellent h...

              July 06, 2011 view discussion
              • supervivencia has created a new message board discussion

                My dear husband , 54 years old, diagnosed 07/10, just underwent a second GBM surgery- a 4 hour awake craniotomy, and he is recovering extremely well in some ways. They took out something the size of a golf ball. I still don't know how much was cancer and how much was necrosis. A couple of days later the excruciating headaches are completely gone and he hasn't had so much as a Tylenol  for pain! And just whe...

                June 25, 2011 view discussion
                • supervivencia has created a new message board discussion

                  We are now 11 months into the GBM journey and Andy is in the hospital about to undergo a second surgery in Toronto.  The first surgery I think was mainly a biopsy.  Radiation, temodal worked for about 7 months, then his headaches just got really bad again...every time he changes position, even just to bend down to brush his teeth. His daughter says "don't worry about brushing your teeth--after a few da...

                  June 18, 2011 view discussion
                  • supervivencia has created a new message board discussion

                    My 54 year old husband diagnosed July 2010 GBM was having horrible headaches last week. Symptoms have clearly progressed. had to rush him to hospital because he collapsed (for the first time after diagnosis almost a year ago) and he has now squiggles and blind spots. At home I raised his dex to 16 mgs. and had started giving him hydromorphone for extreme headaches.  Just a temporary fix.  The hospital ...

                    June 17, 2011 view discussion
                    • supervivencia has created a new message board discussion

                      Does anyone have any experience with the effects of this drug?

                      June 07, 2011 view discussion
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                      About supervivencia

                      Caregiver
                      Brain Cancer
                      Chemotherapy, Clinical Trials and Research, Conventional Treatments, Emotional Support, Physical Therapy, Side Effects, Spiritual Support, Surgery

                      My husband, Andy, who is 54 was first diagnosed with GBM Stage 4 Brain Cancer on July 24,2010...out of the blue. He was calmly looking at a hummingbird and then said "I can't feel the left side of my body." Thus began the journey. We are looking for all positive "what works for you" feedback. We need to believe together that this condition can be tamed. What are your positive suggestions? Do you know any long-term survivors? Love to all!! Kathryn

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