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johngiustino's Recent CancerCompass Activity

  • johngiustino has replied to a post on the message board

    I will be 4 years post diagnosis in 2 weeks.  Stay positive.  it is the best medicine you can give yourself. I don't mean to trivialize what we go through. It is a tough road for all, but I have learned that it does no good for you or the people around you to be any different. Even in dire  and scary times.  I heard a story the other day on the radio about a monk who feels it is his m...

    September 19 at 4:42 AM view post
    • johngiustino has replied to a post on the message board

      http://clinicaltrials.gov/ct2/results?term=gbm+seattle is he newly diagnosed or recurrent?

      September 07 at 5:19 AM view post
      • johngiustino has replied to a post on the message board

        dr chen is incredible -educated and compassionate and he clearly knows his art he went far far out of his way to start th ablation a week early for me and another patient - a good thing too there was an agressive and unexpected 2 cm growth found and treated. to do so caused swelling - and my left arm is not working so well now - but it is getting better with 18 mg dex per day. i can see it will be near normal in a ...

        September 06 at 5:30 AM view post
        • johngiustino has replied to a post on the message board

          sorry to be so brief but i just had surgery this an often cited website http://brainhospice.com/ i wish you the best possible outcome and peace above all JG http://brainhospice.com/

          September 06 at 4:46 AM view post
          • johngiustino has replied to a post on the message board

            They moved my ablation up to today at noon.  I am glad to get started on the path forward. Some of you asked if it left burned tissue behind.  I was told not. If you think about the cells of the tumor being water balloons, the ablation pops the balloon and spills the contents.  Not sure what does the clean up, but no, there is nothing burnt left behind. Until later -JG

            August 30 at 4:05 PM view post
            • johngiustino has replied to a post on the message board

              Is he on decadron (dexamethasone) ?  If so to me, that could be the cause  Many people become distant and angry on this drug (I did) -Kevin

              August 26 at 7:05 PM view post
              • johngiustino has replied to a post on the message board

                As we all know, there are risks to any surgery or surgery like procedure.  I was informed of those.  For example, infection and so on. However, I was told the procedure is generally safe and I read up on it quite a bit and that is my impression.  The result of heating the tissue is a bit like cauderization but I have seen before and after MRI pictures in published journal articles and whatever might r...

                August 26 at 4:06 PM view post
                • johngiustino has replied to a post on the message board

                  I would strongly consider pd-1.  

                  August 23 at 5:41 PM view post
                  • johngiustino has replied to a post on the message board

                    I am curious why cryopreservation would have an advantage over flash freezing. I am not familiar with storing your tumor this way.  What do you plan to do in the future with it. Also, how much does it cost? I am asking without have any knowledge of the area. Thanks, JG

                    August 23 at 5:38 PM view post
                    • johngiustino has created a new message board discussion

                      I recently had my 3rd resection starting in November 13.  It is my 4th overall considering the first post diagnosis on Oct 3, 2010. All have been done by the best neurosurgeons in southern CA in my opinion. The last had a very high degree of resection but there was some residual left behind, not unexpected even in the best of resections.  To clean up the rest, I have opted for laser (or thermal) ablation w...

                      August 22 at 8:58 AM view discussion
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                      About johngiustino

                      Survivor
                      Brain Cancer
                      Cancer Treatments, Clinical Trials and Research, Supplements

                      46 year old father and husband diagnosed October 2010 with GBM. 99+% resection, radiation/Temador and a clean MRI until October 2013 with a recurrence. Entered into a dendritic cell clinical trial in November 2013 after a resection.

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