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bizzerbee's Recent CancerCompass Activity

  • bizzerbee has replied to a post on the message board

    5 years is a big deal! That is so great that you are doing so well. When my husband was diagnosed it really knocked me sideways. He is young, was 31 at diagnosis. We have a little boy. Somedays when I read others sucesses I begin to have hope for our future. Other times I am still filled with such worry and sadness. Brain cancer seems so different from other cancers. So much uncertainty from month to month. Anyway, ...

    November 15 at 1:41 PM view post
    • bizzerbee has replied to a post on the message board

      There are a bunch of Glioblastoma groups on facebook. I would join and ask on there as well. I just know I have seen people posting about being on disability and SS with the same and lesser diagnosis as you. Because this type of cancer is considered "incurable" and remission is not a term the doctors use I do not see why you would need active tumor growth to be approved. Seriously, I really think you need to push the...

      November 14 at 1:56 PM view post
      • bizzerbee has replied to a post on the message board

        If I was you I would locate a cancer support group in your area. One like Gildas Club. They tend to have people that are trained in helping with these types of situations. I am totally suprised you were denied. I know other who have AA3s which has a slightly better prognosis and they are automatically granted social security. Find someone to help you. You should not be struggling to make ends meet and not getting sca...

        November 13 at 3:47 PM view post
        • bizzerbee has created a new message board discussion

          Hi, I joined this board back in May when my husband was first diagnosed with AA3. I literally went back and read almost every Astrocytoma post ever made on this board. I read A LOT of your posts and they were a beacon of home. Then I realized that you had not posted in a while and I began to worry about you. Seeing that you posted this month and that you are five years out and doing well just made me so glad. I know...

          November 13 at 3:43 PM view discussion
          • bizzerbee has replied to a post on the message board

            Now that he is done with maintene is he less foggy and tired? I am hoping that it is just chemo/treatment and not his forever norm. He used to love to boulder climb in the gym but hasnt in months since he just has no extra energy to work out. 

            September 20 at 6:44 PM view post
            • bizzerbee has replied to a post on the message board

              Hey, My  husand is also doing really well. We were on summer break during radiation so my husband did not need to work but now the school year has begun and he is back in the classroom full time. He is definitly more fatigued than he used to be and often feels like he has hit a wall. He did one round of maintence chemo and it went really well he had no nausea just some tiredness by day 5/6. We have not had our ...

              September 19 at 1:04 PM view post
              • bizzerbee has replied to a post on the message board

                My husband is also IDH1 mutated but was not co deleted or methylated. Did you already do radiation?

                August 04 at 1:53 PM view post
                • bizzerbee has replied to a post on the message board

                  My husband is the one with an AA3 but I have done so much reading in the subject in order to help him and I am amazed by how little is understood about brain cancer in general and then AAs. I am glad your doctors are hopeful! Were you able to have a full resection? My husbands tumor was the size of a golf ball in his right frontal lobe. Despite the size he had no swelling and it did not shift his midline. This says t...

                  August 03 at 4:04 PM view post
                  • bizzerbee has replied to a post on the message board

                    First, congrats on making the ten year mark!!!! That is amazing!! Have you have any reoccurrences during that time? What was your treatment? When you say alien type do you mean IDH1 mutated?

                    August 03 at 3:58 PM view post
                    • bizzerbee has replied to a post on the message board

                      I agree with PP dex can certainly alter ones mood to be more angry and short tempered but at the same time the triggers are real. The disease is real and has its own real emotional impacts. I would speak to your loved one. Try and start an open dialogue about it. I spoke with my husbands NO about his mood swings and the three of us talked about it. It was helpful for both myself and my husband.

                      July 16 at 11:07 PM view post
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