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bizzerbee's Recent CancerCompass Activity

  • bizzerbee has replied to a post on the message board

    Thank you for sharing both of these articles! Facinating research that brings me hope.

    20 hours ago view post
    • bizzerbee has replied to a post on the message board

      Thank you for answering my questions. It sounds like you and my husband are very much so in the same boat! This is such a wild ride and I have found that I can only really get an understanding of the reality of this type of cancer from these forums; talking to actual people and not looking at medical sites that have very generic info. I am hoping that our two year old keeps my husband active and helps to fight the fa...

      Yesterday at 6:26 PM view post
      • bizzerbee has replied to a post on the message board

        You are right there is so much on the horizon for brain cancer. My husband is just getting regular radiation. Very pin pointed but not proton. They don’t have that type here in Wisconsin. I was surprised that out NO did not talk more to us about the T2 flair on the post op MRI. Did your tumor have any of the favorable markers? How was the radiation for you? Did it leave you with a lot of fatigue? Was the maintenxe ch...

        Yesterday at 12:32 AM view post
        • bizzerbee has replied to a post on the message board

          How long into your journey are you? Are your NOs optimistic? It seems from this site that some are luck and have very positive oncologists and others have pessimistic ones.

          Wednesday at 6:47 PM view post
          • bizzerbee has replied to a post on the message board

            It looks like it’s T2 flair progression.. I guess that implies it’s gearing up to regrow not that there is already growth. No change in treatment except radiation targeting those areas a little bit stronger. All we can do is wait for the radiation treatments to end and then see what’s going on in the follow up MRI. Hate this hurry up and wait crap.

            Wednesday at 5:16 PM view post
            • bizzerbee has created a new message board discussion

              We got the results from my Husbands pre-radiation MRI.. they said that it seems like disease progression. He has AA3 and had a total resection. He has the IDH1 mutation but not the MGMT. I am in shock. How would it have grown so quickly? It was a 100% gross total removal! I am upset it feels like a huge set back on a journey that we have barely even begun! Has anyone had a similar experience?

              June 13 at 4:10 PM view discussion
              • bizzerbee has replied to a post on the message board

                Did you also recieve chemo or just radiation? Can I ask why your docotor thought just 5 years even after a full resection? Did you have the IDH1 mutation? I am sorry for all the questions. I have been reading so much long term survivor stories and I am trying to find the commonalities even though for the most part it does seem largly random who makes it and who doesn't. Your 17 years does give me hope. Thank you for ...

                May 30 at 2:22 PM view post
                • bizzerbee has replied to a post on the message board

                  I thought I had written back to you but I do not see my response. Thank you so much for reaching out to me. This is such a scary disease with so little concrete information to go on. I have been doing as much reading as I can and it really does bring me strength.. power in knowledge I guess. Did you go back to working full time? My husband is a teacher and I know he is afraid that he wont be able to do that anymore. ...

                  May 30 at 2:18 PM view post
                  • bizzerbee has replied to a post on the message board

                    Thank you so much for responding to me. I very much enjoy your outlook that this is a life long illness vs. terminal. Can I ask what kind of cognitive issues you are dealing with? Are you working? What kind of prognosis did your doctors tell you?  Thank you for taking the time to respond. I really appreciate it. It is comforting finding others dealing with this strange/terrible disease. Thank you

                    May 29 at 6:08 PM view post
                    • bizzerbee has replied to a post on the message board

                      Thank you so much. Your words made me smile and brought me comfort. I cannot fully express how much I needed both. Thank you for taking the tune to write. I will undoubtedly read abdcre-read your words again in the days/months/years to come.

                      May 27 at 10:18 PM view post
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