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hopepraylove's Recent CancerCompass Activity

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

        You mentioned that she is under hospice care. I am surprised that they are not doing more to manage her discomfort, including her neck and the pain from the blood clots. What you are describing sounds horrible and inconsistent with everything I know about the end-of-life care that hospice provides. Christi

        April 10 at 2:49 PM view post
        • hopepraylove has replied to a post on the message board

          I hope you can get an appointment. We have been very happy with Duke (although my husband's doctor -- who he loves -- is leaving and we don't yet know who his new doctor will be. Are you newly-diagnosed or have you had a reoccurrence?

          April 09 at 12:35 PM view post
          • hopepraylove has replied to a post on the message board

            See link to recent article about Optune on Cancer Compass home page.

            April 08 at 4:23 PM view post
            • hopepraylove has replied to a post on the message board

              Debbie, Left me know if you have any questions. My husband was diagnosed in February 2016 and has just completed twelve 5/23 cycles of Temodar. So we may be travelling the same road about a year ahead of you. I posted on this thread a few minutes ago with what I know about Optune so I won't repeat it here. Best, Christi

              April 08 at 4:22 PM view post
              • hopepraylove has replied to a post on the message board

                We don't have experience with Optune but we researched it and my husband (Dx 2/16 GBM stage 4) decided not to do it because He felt that the "modest survivial benefit" was not as important to him as a quality of life - he was told that it is hot and uncomfortable and the beeping starts inexplicably and the batteries have to be changed and -- more importantly -- a constant reminder to the patient and everyone around h...

                April 08 at 4:18 PM view post
                • hopepraylove has replied to a post on the message board

                  Hi, We know about it because my husband is begin followed at the Brain Tumor Center at Duke and it is our Plan B if he has a reocurrence (he is 14 months post-diagnosis). We know someone who is participating in the polio trial - he had the infusion about two months ago and is doing well - his MRI this week was good. He was told that he was the 40th patient at Duke to enroll in this trial. It is still a stage 1 t...

                  April 08 at 3:51 PM view post
                  • hopepraylove has replied to a post on the message board

                    Please read messages before you post replies. This woman's daughter is in the end stages of death. While I am sure your messages about "pop" and other nutritional advice are well-intended, they are not what this woman needs to hear.

                    April 08 at 3:28 PM view post
                    • hopepraylove has replied to a post on the message board

                      I am so sorry, Monica. I wish you and your family peace. Christi

                      April 07 at 8:54 PM view post
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