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johngiustino's Recent CancerCompass Activity

  • johngiustino has replied to a post on the message board

    Dexamethasone can supress your immune system and make you susceptible to serious infections like pneumonia.  You should talk to your doctor about this possibility.  Dexamethasone has a lot of side effects - overeating, horrible mood changes, and the above. Dexamethasone (decadron or dex) is a very important in treating inflammation of the brain and edema on the brain which can be very serious if not ...

    5 hours ago view post
    • johngiustino has replied to a post on the message board

      The first time around the temador can be hard on you - it could be that.  After each 5 days of th 5/23 cycle.  I felt really crummy which included feeling exhausted..  I imagine she also just finished her radiotherapy which has a way of sneaking up on you.  I was told that you don't really feel the effects of radiation until about a month or so after you finish which was my experience exactly. Tho...

      8 hours ago view post
      • johngiustino has created a new message board discussion

        Recently, during a clinical trial, I've had an increase in the size of my tumor.  Enough for my doctor to be under an obligation to take me off the trial.  It is disappointing but I have through 3 recurrences in the last 6 months, and I am facing it as something I have to deal with, nothing more, and moving forward. All recurrences and the recent growth of the last recurrence have been confined to my surgi...

        July 19 at 3:34 PM view discussion
        • johngiustino has replied to a post on the message board

          You need to consult your surgeon.  When they give you anesthesia, they need to know what kind of sedatives you recently took and Lorazepam would be one of them.  Theoretically, they may have to adjust what they give you during the surgery but I wouldn't think so.   I am not a doctor, but I think if you took it the evening before it would not be in your system the next morning.  Just make sure y...

          July 19 at 2:07 PM view post
          • johngiustino has replied to a post on the message board

            I would not hesitate to do the Nivolumab trial.  Pharmaceutical companies are scrambling to be the first to market on this approach (see the wikipedia article) It is an immune activating therapy that uses an antibody (versus a drug like Temador).  I believe this trial is open only to first time recurrences.  Considering immunotherapies typically have limited and managable side effects, if at all a...

            July 15 at 3:28 AM view post
            • johngiustino has replied to a post on the message board

              You should report this to your doctor right away. It could be due to withdrawal. But it sounds more serious to me (I am not a doctor though):  Decadron can strongly suppress your immune system and make you more susceptible to diseases like pneumonia.  I would say if the issue makes you uncomfortable or gets more painful or debilitating go to the ER right away. As described spasms and trouble breathing mig...

              July 12 at 11:59 AM view post
              • johngiustino has replied to a post on the message board

                The location of the tumor may play a role in how she is acting. Your N or NO should be able to explain her behaviour to you based on hte tumor location.  This is well within their training.  Have them predict what might happen if the tumor grows in one direction or another.  This kind of info should at least give you  a reason for how she is acting, which may take the edge off of having to deal wi...

                July 08 at 10:16 AM view post
                • johngiustino has replied to a post on the message board

                  I am sorry, but I don't have the medical paper in front of me.  But there is such a paper that indicates MGMT expression is not homogenous in brain tumors.  In other words, if you biopsy from one part of the tumor it may have a different amount of MGMT than another. That being so, if a pathologist (the doctor you would need) examines a sample of your tumor and finds MGMT methylated it may not be so in the ...

                  July 04 at 3:46 AM view post
                  • johngiustino has replied to a post on the message board

                    During my vaccine trial, they wanted to know if I had any rash or fever. I don't think it would unreasonable to get allergy like symptoms too. If you were to get a vaccination for anything like shingles, flu, etc... there would be similar concerns. By far most vaccinations of any type are problem free. This does not mean that for a less tested therapy that is still be studied (like DCVax) there can always be unknow...

                    June 30 at 4:40 AM view post
                    • johngiustino has replied to a post on the message board

                      There is a trial for first time recurrences at UCLA that is extremely promising and many major pharmaceutical companies are scrambling to make it to market first: MK-3475 pd 1 antibody http://www.cancer.ucla.edu/index.aspx?recordid=730&page=644 If you have a first recurrence please consider it.  Last I looked the trial is open now.

                      June 29 at 4:05 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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