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johngiustino's Recent CancerCompass Activity

  • johngiustino has replied to a post on the message board

    I am on 42 months with two recent recurrences and subsequent surgeries (Nov 19-13, March 18-14). I am still spending quality time with my family and working.  Stay positive, keep living your life the best you can with the people you care about, and ignore the statistics. I used to think a lot about how long I would live post diagnosis especially early on when I felt my worst but I came to the realizati...

    April 14 at 5:37 AM view post
    • johngiustino has created a new message board discussion

      As some of you know, I had my first recurrence 3.5 years after my iniitial diagnosis - I am blessed indeed. I had it removed November 15.  My second appeared in the surgical cavity of the first recurrence.  Recurrences 1 an 2 were in both "slient" parts of th brain and were easily surgically accessible.  Both resecctions went as well as they could have accordin to the NS.  I have followup MRI in ...

      April 01 at 7:40 AM view discussion
      • johngiustino has replied to a post on the message board

        The chemo symptoms can last awhile even once chemo is finished.  It was a good year before the fatigue was diminished to a point where I did not need a daily nap.  My appetite was knocked out for a good several months after completing 12 cycles of 5/23 Temador.  It really takes a beating on your body but it will pass.  If your bloodwork is good I would push through the standard 6 month treatment (...

        April 01 at 7:25 AM view post
        • johngiustino has replied to a post on the message board

          Is your partner on any other treatments or just Valcyte? Can you describe what other treatments have been tried in the past.  Probably resection, followed by standard radiation and chemotherapy?  When was your partner diagnosed. I am really interested in this information.  At one point I considered Valcyte and may so again in the future.  I was surprised that my rather medically conservative onc...

          March 29 at 8:15 PM view post
          • johngiustino has replied to a post on the message board

            I have very minor left side control issues.  I feel bad even complaining about them.  Nevertheless, I went to a PT and OT referred by my NO.  Both get a lot of brain tumor patients from his clinic and are aware of BT issues.  I found the visit to the OT and PT very helpful in understanding what is going on.  For example, I stumble a lot because my left foot drags sometimes.  I found out ...

            March 05 at 3:34 AM view post
            • johngiustino has replied to a post on the message board

              I am a 3.5 year survivor with a recent recurrence.  I am luckier than most on this board, but I still like to hear about long term survivors, especially those that make it longer than I have.  I have always been positive about things and you are right about it making a difference.   Please keep posting for everyone, JG

              February 22 at 8:50 PM view post
              • johngiustino has replied to a post on the message board

                I think but I am not sure that the scar is from where they cut your scalp and pull it back (like an orange peel) to access the skull.  Definitely a question for your neurosurgeon.

                February 20 at 4:55 AM view post
                • johngiustino has replied to a post on the message board

                  I am on a trial and they also discourage supplements.  I have mixed feelings about that because they are running an experiment and don't their data to be hard to interpret. Not sure if that is the best for me. On the other side I would hate for supplements to mess up the therapy in the trial. You are right though trials have unsure outcomes - it is a gamble. I am only considering phase 1 trials because I know I ...

                  February 19 at 2:58 AM view post
                  • johngiustino has replied to a post on the message board

                    To take the middle ground, I would read Ben Williams book and his online updated information on the treatment of brain tumors. It does not suggest that supplements or alternate therapy is the only way to go.  Rather he supports the idea of combining them with the more standard medically proven approaches. I have been pretty lucky so far and took supplements along with the standard therapy early on.  I sto...

                    February 19 at 2:47 AM view post
                    • johngiustino has replied to a post on the message board

                      One more strange thing.  It gave me nearly non-stop hiccups for a month.  It sounds funny but it was not.

                      February 19 at 2:36 AM view post
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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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