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HubbyhasGBM's Recent CancerCompass Activity

  • HubbyhasGBM has replied to a post on the message board

    Thank you all for your kind responses.  There is no one in the world who understands the journey, nor the aftermath like those of you going through the same thing.  I'm actually doing very well, I think.  It's odd to say, but returning to a "normal" life again has been quite the transition.  The hospital equipment was removed today and it left a hole in our home.  It had become so much a part...

    November 27, 2012 view post
    • HubbyhasGBM has created a new message board discussion

      Hello all.  I wanted to offer an update that I lost my husband November 20, 2012 to GBM.  He put up a good fight.  We lived as good a year as was possible.  He was surrounded by love and, for the most part, died peacefully in our local hospice center with our two children and me by his side. I hate adding this without offering some hope to those of you new to this disease.  Our neurosurgeon ...

      November 22, 2012 view discussion
      • HubbyhasGBM

        HubbyhasGBM Thanks Oakisland. I appreciate the warm thoughts! It's been a tough week...well, month,...well, 16 months. You all understand! : )

        November 23, 2012
    • HubbyhasGBM has replied to a post on the message board

      Oh Karyn - you and I were neck-and-neck on this.  My Ken passed away November 20.  His passing was peaceful, too.  Love your spirit.  Commend your bravery.  Feel your heartache.  Know your pain. I'll be in touch after the funeral circus ends.  Be strong.  We're not done until we live again. Hugs to you!

      November 22, 2012 view post
      • HubbyhasGBM has replied to a post on the message board

        Thanks to all of you for your thoughtful replies.  It means a lot to me right now!  The funny thing is that after 3 weeks of him having profound confusion, I am really, really, really missing intelligent adult conversation.  I'm like a starving person who hits a buffet!  I'm actually struggling with making small talk that does NOT involve cancer - something that I promised myself I would not do!&...

        November 17, 2012 view post
        • HubbyhasGBM has created a new message board discussion

          Hey everyone.  My husband has had a setback and I'm just posting as an update since I considered most of you friends.  On October 30, he became resistant to having his head elevated at night.  That night, he insisted he keep his head flat and the swelling, by morning, had caused nausea and vomiting, which prevented his pills from staying down.  By afternoon, no other meds were able to be taken eit...

          November 16, 2012 view discussion
          • HubbyhasGBM has replied to a post on the message board

            Thank you to those who have replied.  I REALLY appreciate it!  Today has been very hard because we had a sleepless night, back-to-back with a vomiting morning, and then the medicine has left him restless, confused, and amped up this afternoon.  We put him in an upstairs bedroom because the bathroom is handicap accessible, but all my foods, medicines, etc. are all downstairs, and every time I try to go ...

            October 30, 2012 view post
            • HubbyhasGBM has created a new message board discussion

              Hi all.  Any of you have any suggestions for end stage nausea control?  Tried Zofran.  Tried upping the decadron - in pill form.  That came back up.  Also, I'm hearing mixed opinions on morphine.  Some say it won't touch intracranial pressure.  What is the experience of some of you who are on this road? Thanks.

              October 30, 2012 view discussion
              • HubbyhasGBM has replied to a post on the message board

                Local family doc just visited our home and did a check.  Thinks it is just moon-faced decadron swelling.  There is a risk of some heart damage, probably from chemo effects.  I'll keep this post updated if it turns into more that might be helpful to others traveling this path.  I really appreciate the replies.  You guys are great. 

                October 25, 2012 view post
                • HubbyhasGBM has created a new message board discussion

                  Hi all.  Go another question for all you more experienced warriors.  My husbands cheeks, throat and neck are very swollen.  The hospice nurse said she does not believe this is GBM related, but could indicate a heart condition, or perhaps that the cancer has metastasized into his lymph glands, or his liver.  She checked his liver for tenderness, and found none.  I assured her that we were told...

                  October 25, 2012 view discussion
                  • HubbyhasGBM has replied to a post on the message board

                    Like everyone else, I am truly sorry to hear this.  I'm right behind you.  My husband's breathing was labored last night and hospice said it could happen anytime now.  That said, she also said he may make it to the holidays, so we're taking it day to day.  Bill was lucky to have such a loving, compassionate spouse in you.  And, I agree with Karyn...it's okay to collapse for a while.  You...

                    October 17, 2012 view post
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                    About HubbyhasGBM

                    Caregiver
                    Brain Cancer
                    Cancer Treatments, Clinical Trials and Research, Emotional Support

                    My 44-year-old husband was diagnosed with a 5.5 cm. GBM in his right temporal lobe 7/7/11. He had a 99% resection done 7/12/11, followed by 6 weeks of radiation & Temodar. He completed 8 rounds of the 5/28 Temodar schedule. His MGMT gene is unmethylated. We live far from large hospitals, but are receiving excellent care. He is amazing and courageous. My hero.
                    3/8/12 Finished 8th round of Temodar
                    4/18/12 MRI shows possible recurrence deep in brain. NS says it is highly risky to operate. Urges additional try at chemo. Oncologist rules out Temodar and opts to wait until spot shows signs of not being necrosis or edema.
                    5/21/12 Radiologist and Neurosurgeon disagree about growth.
                    7/11/12 MRI shows distinct growth. Surgery possible but very risky. Awaiting chemo advice.
                    7/18/12 Oncologist suggests Avastin & Irinotecan. Hubby is undecided on start date due to 2 bucket list trips.
                    8/2/12 Profound headaches. Two days later he is in ER with vomiting accompanying headaches. Stronger meds don't work.
                    Then put him on decadron. Responds well.
                    8/13/12 and 8/28/12 husband takes Avastin & Irinotecan. Knocks him out (sleeping almost all day.) Has almost every side effect listed except death. Discontinues chemo, opts to let disease run course.
                    9/4/12 Enlists hospice care.
                    10/30/12 Admitted to hospital with uncontollable nausea and vomiting.
                    11/1/12 Admitted to in-patient hospice center.
                    11/20/12 Died peacefully.

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