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hopepraylove's Recent CancerCompass Activity

  • hopepraylove has replied to a post on the message board

    Echoing Dodger, my understanding is that all newly-diagnosed GBM patients receive the treatment that is the standard of care (surgery, radiation, oral temodar for 5-12 cycles). Temodar works better for some than others, and may be followed by a course of Avastin. Some patients choose to use Optune, which is a tumor-treating fileld "cap" that the patient wears 18 hours every day. As far as I know, chemical trials ar...

    June 04 at 8:12 PM view post
    • hopepraylove has replied to a post on the message board

      My husband has applied for disability but has not yet been approved. Nobody ever said that dealing with the Social Security Administration was efficient. Christi

      June 04 at 8:02 PM view post
      • hopepraylove has replied to a post on the message board

        Hi Debbi, Just saw you message. The survivor we met was part of an early trial for newly-diagnosed GBM. He told us that he used it for a year and at the end of the trial they told him he could continue using it and he said "hell no!" He said that he hated having to shave his head every few days and reattach the sensors. He also said it was hot and uncomfortable and he had false alarms all the time. He lives i...

        June 04 at 8:01 PM view post
        • hopepraylove has replied to a post on the message board

          I am sorry for your loss. Thank you for continuing to update your posts. I've been present during that end-of-life period with my father and with two close friends who were killed by cancer. It's a surreal experience when you sit beside a bed day after day hoping that death will come soon because the person you love is suffering unnecessarily. May you and your family find peace.

          May 25 at 12:10 PM view post
          • hopepraylove has replied to a post on the message board

            My husband is being followed at Duke. He goes there every 8 weeks and the wizards (his term) review his MRI. We've been very happy with his experience there over the past year.

            May 25 at 11:57 AM view post
            • hopepraylove has replied to a post on the message board

              This may help. https://web.archive.org/web/20160110152605/http://www.brainhospice.com/index.html

              May 25 at 11:52 AM view post
              • hopepraylove has replied to a post on the message board

                My husband (16 months post-diagnosis, surgery, etc.) feels much better two months after stopping after twelve 5/23 cycles of TMZ. It stays in the system awhile. His neuro-oncologist also prescribed Ritalin, which has helped with fatigue and focus. So far we have decided not to do Optune (after discussions with a survivor who used it for a year). I look forward to following this thread about your experiences with it.

                May 25 at 11:38 AM view post
                • hopepraylove has replied to a post on the message board

                  My husband had the same first symptoms and same treatment except for Optune. He is 16 months post-diagnosis and still has some word retrieval issues. He has difficulty typing and his text messages are often gibberish. He speaks more slowly than he used to but has not gotten worse since diagnosis. His speech is much clearer in the morning than when he is tired later in the day.

                  May 25 at 11:28 AM view post
                  • hopepraylove has replied to a post on the message board

                    Hi Diana, Yes.  I decided to start a new thread here just about the polio trial at Duke.  I have been reading your posts on the older threat about your friend Mary and I have read the posts about Dr. Friedman (and I agree with what you said about him). I have also read the articles you linked to along with everything else I can find on the subject of recurrent GBM in the hopes of being prepared if and when...

                    May 09 at 7:22 PM view post
                    • hopepraylove has created a new message board discussion

                      My 61-year old husband (diagnosis and resection February 2016) is being treated at University of Miami and "followed" at Duke (they see him and read his MRI every eight weeks). We consider him to be "in line" for the polio vaccine trial in the event of a reoccurrence (although Duke has only said that he "would be a candidate"). He is 15 months out from surgery and radiation and just this month stopped oral 5/23 Tem...

                      May 09 at 4:27 PM view discussion
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