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hopepraylove's Recent CancerCompass Activity

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

                    Do you have hospice care? They should be able to help with this question. She should not be allowed to starve (although in my experience, people don't usually last this long after they refuse food). Having been with several people as they died, her brief consciousness and time out of bed does sound like the surge of energy and awareness that often comes just before the final moment of death. But one of my friends w...

                    April 02 at 6:16 PM view post
                    • hopepraylove has replied to a post on the message board

                      Monica, I am so sorry. I know it is a shock that he could go from diagnosis to hospice in such a short period of time. I agree with you that your husband has been spared pain and suffering. So have you and your family. I hope he passes gently and that when he does, you will feel peace. You will feel many things, but I hope peace is one of them. A dear friend read the following at my father's bedside in the f...

                      April 02 at 6:09 PM view post
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