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Hd8906's Recent CancerCompass Activity

  • Hd8906 has created a new message board discussion

    My son age 42, had a benign PA totally resected in 1989.  In Dec. 2015 it recurred (extremely rare) and was resected (99%).  Doctors could not classify it, it had none of the "genetics of a GBM."   Surgeon looked at it OR and thought it was "all benign" but pathology showed mitosis.  Radiation and 6 months Temador, clear MRIs for one year, then a recurrence at the rim of previous surgery.&nbs...

    August 08 at 10:03 PM view discussion
    • Hd8906 has replied to a post on the message board

      I sent you a private message with some helpful links.

      July 22 at 4:40 PM view post
      • Hd8906 has replied to a post on the message board

        My son's initial surgery was in 1989 when he was 14...but the tumor had been there for a while, probably several years prior to that.  He then led a perfectly normal life for 27 years until the first recurrence in 2016...doctors say to this day that the tumor has them confused and it's very atypical.  That's what prompted me to do my own research.    Well, in 2016 doctor remove...

        July 21 at 7:09 PM view post
        • Hd8906 has replied to a post on the message board

          My son had a benign (Grade 1) JPA completely removed in 1989 and it recurred in 2015!  Now they've called it a GBM but malignant transformation of a JPA without prior radiation is extremely rare.  I've done a year's research on JPAs and I will tell you that doctors know very little about them.  They can certainly mimic high-grade gliomas and yes, they can recur, but recurrence does not mean malignant t...

          July 21 at 4:38 PM view post
          • Hd8906 has replied to a post on the message board

            Enjoy your trek!  I've sent you a private message, Dodger.

            June 21 at 12:39 AM view post
            • Hd8906 has created a new message board discussion

              Anyone have any experience with the Dana Farber online second opinion service?  Best thing is that they will round up all the required records and scan resuts. My son has an atypical tumor but treated as GrIV.  After surgery (99%) and one year of clear scans he had a recurrence three months ago.  Enrolled in BBI608 trial but last MRI showed a low of inflammation and swelling and some growth so he is n...

              May 07 at 9:41 PM view discussion
              • Hd8906 has replied to a post on the message board

                Thank you for your advice and prayers.  I hope that your wife will continue to hear good news!  My son's NO feels that a breakthrough is near and says if he didn't truly believe this, he couldn't do his job.  (We are in NYC.)

                March 06 at 9:27 PM view post
                • Hd8906 has created a new message board discussion

                  Does anyone know about this clinical trial?  My son will begin it this week.  I've read a little...just wondering if anyone has any more info. Also, he's had a recurrence after one year and NO and surgeon say it is speech area and they won't operate.  Should we show the MRI to another neurosurgeon? Thanks.

                  March 06 at 6:00 PM view discussion
                  • Hd8906 has created a new message board discussion

                    Hello.  My son has an atypical tumor(had a benign pilocytic astrocytoma removed 27 years ago in same spot).  This atypical(high proliferative index, no necrosis, no microvascular proliferation, no visible infiltration) tumor was removed one year ago...radiation followed by chemo for six months.  Clear MRIs until almost one year to the day from surgery.  A nodule was found right near the ...

                    March 04 at 8:51 PM view discussion
                    • Hd8906 has replied to a post on the message board

                      Hello.  Yes, my son had the genetic testing done through Foundation Medicine.  This is the company his hospital uses.  They found two targeted meds for him but we have not used them yet.

                      February 08 at 3:37 AM view post
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