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Ozgirl's Recent CancerCompass Activity

  • Ozgirl has replied to a post on the message board

    Please ignore the question marks! I posted a smilie face but it mustn't have worked because I'm on an iPhone!

    January 05, 2017 view post
    • Ozgirl has replied to a post on the message board

      Hi bl2860, Sorry for my tardy reply. Yes, Roche pays for the Avastin after the initial 5 doses. I hope things are going well for you and your family ??.

      January 05, 2017 view post
      • Ozgirl has replied to a post on the message board

        Hi bl2860, I'm so sorry you've found yourselves in this position! This information may be out of date now... My husband used Avastin with Temozolomide after his recurrence. We had to pay for the first 5 doses at the cost of $5000/dose. My husband had no negative side effects from the temozolomide. We had no knowledge of his methylation status. Please take care. Good luck with the MRI and your baby!

        December 04, 2016 view post
        • Ozgirl has replied to a post on the message board

          Hello girls...just thought I'd say hello. I hope you're doing okay...and all the others that provided me with support when I needed it :)

          June 14, 2015 view post
          • Ozgirl has replied to a post on the message board

            Still avoid...

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            • Ozgirl has replied to a post on the message board

              Hi kiwijude, i'm so sorry about your mother. Maybe your mother needs all her energy just to get through the day. Her diagnosis will have taken a terrible physical and psychological toll on her. Maybe just sit with her and hold her hand quietly, and when she has the energy/ inclination to do something, you can follow her lead. I wish you all the very best.

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              • Ozgirl has replied to a post on the message board

                Dear XXYZ, I'm so very sorry. You have done an amazing job looking after your son. I'm so sad for the huge hurt you're feeling...and will continue to feel. My thoughts and prayers are with you.

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                • Ozgirl has replied to a post on the message board

                  Hi Glitzy, Isn't it funny that sense of urgency that results from realising how short life can be? It's early days for you yet...just sit back, play with your baby, take time to recover...everything will fall into place in time. I naively thought that I'd be back to my old self after 12 months. What was I thinking??! The person you were before you were forced into the carer role is still there...somewhere under the ...

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                  • Ozgirl has replied to a post on the message board

                    Hi eternalife, no suggestions of book titles sorry. We're a day apart aren't we so Ii just thought I'll be keeping you in my thoughts over the next few days. One year...we made it!! It still seems unbelievable at times...so weird. I'm working on the anniversary day but I've decided to take it off next year. When I returned to work 2 months after my husband's death - I'd been off for the 13 months since diagnosis - I ...

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                    • Ozgirl has replied to a post on the message board

                      Dear Jon, I'm so very sorry.

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                      About Ozgirl

                      Caregiver
                      Brain Cancer

                      My 52 year old husband was diagnosed with a right frontoparietal GBM in July 2012.
                      What a world changer!!
                      He's being treated using the standard Stupp protocol, gliadel wafers, dexamethasone, and antiepileptic medication.
                      He suffered recurrence in November 2012 which required a second craniotomy.
                      He's doing really well and I've taken leave from work so we can enjoy our time together.

                      Our children are 17, 18, and 20. Almost, but not quite launched!

                      April 2013. Physical and cognitive decline. MRI revealed multiple inoperable tumours. Commenced Avastin. Dexamethasone increased.

                      June 2013. Unsure if Avastin is working. Nothing to lose so he's continuing.

                      July 2013. Rapid cognitive and physical decline. My beautiful husband died peacefully in our bed on the 29/7/13 surrounded by our daughters and me.

                      Our struggle is over...

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