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hopepraylove's Recent CancerCompass Activity

  • hopepraylove has replied to a post on the message board

    Hi, I've not heard anything about resistance to Temodar but it definitely got easier for my husband to tolerate. At 12 months the doctors directed him to stop taking it (they said there was no clinical evidence to support taking it for more than a year). He stopped in April and just last week (early August) learned that he has new tumor progression. Of course we both wonder whether that would have happened had h...

    August 13 at 7:22 PM view post
    • hopepraylove has replied to a post on the message board

      I am sorry to hear about your father. Every patient is different, of couse. Here are a few sites that you may find helpful. https://www.cancer.gov/about-cancer/advanced-cancer/care-choices/care-fact-sheet https://www.cancercare.org/tagged/hospice_and_end-of-life http://www.virtualtrials.com/btlinks/death.cfm http://btbuddies.org.uk/hospice-palliative-care/51-symptom-timeline.html Best wishes, ...

      August 13 at 7:12 PM view post
      • hopepraylove has replied to a post on the message board

        Hi, I am sorry to hear of your diagnosis. My husband is also 61 and was diagnosed in February 2016. He did the standard of care (surgery, radiation, temozolomide, then higher dose tekmozolomind 5 days on/23 days off) for one full year. He stopped the chemo in April and just learned last week that there is new growth. We are currently discussing clinical trial options with University of Miami and the brain tumor ...

        August 13 at 7:04 PM view post
        • 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
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