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Hd8906's Recent CancerCompass Activity

  • 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
          • Hd8906 has replied to a post on the message board

            I so appreciate your advice.  I will meet with the social worker at the hospital next week.  We pray a lot.  Yes, we have lived with this for more than 25 years.  I think I have lived in different degrees of fear for more than 25 years.  Now I am forced to face my fears and I am committed to helping my son in every way I can.  After speaking with his doctors I do feel hopeful.  Than...

            February 04 at 1:25 PM view post
            • Hd8906 has replied to a post on the message board

              This is amazing!  I'm so happy for your brother and yes, he has surely helped people like my son.  I wish him well and continued good health.  You are right.  I should have put "stem cell" trial in the subject line but I've already reposted twice with different subject lines so if I do it again, people might think I'm  being too pushy to get a reply.  I'll wait  a day or so and try...

              February 04 at 2:11 AM view post
              • Hd8906 has created a new message board discussion

                I realize I may not get any responses if I have "scary" in the subject line so I am reposting and taking out that word.  The situation is actually more hopeful than scary: My 41 year old son supposedly had a pilocytic astrocytoma as a child completely removed - I posted about that a day or so ago.  After 25 years he had a seizure in Dec. 2015 and an "atypical" tumor was removed.  (They say it now...

                February 04 at 12:58 AM view discussion
                • Hd8906 has replied to a post on the message board

                  I hope someone has info on these very new therapies.  My husband and I are wrecks but my son is dealing the best.  I know everyone has their own problems but I hope someone will respond!  Even good clinical trial experiences will be helpful.

                  February 03 at 10:52 PM view post
                  • Hd8906 has created a new message board discussion

                    My 41 year old son supposedly had a pilocytic astrocytoma as a child completely removed - I posted about that a day or so ago.  After 25 years he had a seizure in Dec. 2015 and an "atypical" tumor was removed.  (They say it now looks like a pediatric glioblastoma - no one can explain why it took 25 years to re-declare itself.  In that, we have been blessed.) Now it has recurred.  Spoke with h...

                    February 03 at 8:29 PM view discussion
                    • Hd8906 has replied to a post on the message board

                      I hear ya.  I sent some Mri scans to him and he called that same night and said, "This is Dr. Friedman."  I know two other Dr. Friedman's so I, too, was confused for a minute.  All is all, I thought he was a bit abrupt (he's a native New Yorker and so are we) and while his manner might not be a problem for some people, my family and I prefer the TLC approach.  It's out there.&n...

                      February 02 at 8:13 PM view post
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