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hopepraylove's Recent CancerCompass Activity

  • hopepraylove has replied to a post on the message board

    Sigh. Be kind to yourself. Let your family help - don't try to do it all on your own. Be kind to yourself. There is no "right" or "wrong" in these decisions. Trust your heart and instincts. Be kind to yourself. (Yes, I know I said it three times.) Virtual hugs from Florida, Christi

    Wednesday at 4:00 PM view post
    • hopepraylove has replied to a post on the message board

      Monica, This is one of those messages where I want to say I care about you and I am sorry for the pain you are in, but those words seem so empty. But they are all I've got. Sending you virtual fortitude across the miles from Miami, Florida. Warmly, Christi

      March 20 at 9:07 PM view post
      • hopepraylove has replied to a post on the message board

        Hi, My husband is not quite a year ahead of yours time-wise (craniotomy, radiation, Temadar and now on round ten (I think?) of high-dose Temodar. It is stressful to have an MRI every eight weeks but so far they have been clean. Peter's tumor was in the right frontal lobe, so he has some communication issues (difficult to type clearly and speech when he is tired). He gets up at 6 every morning and walks severa...

        March 13 at 9:14 PM view post
        • hopepraylove has replied to a post on the message board

          Dee, I am sorry to hear about your husband's diagnosis. I was in your shoes 13 months ago. My husband's treatment plan was the same as yours. He has had 8 (9?) rounds of oral chemotherapy 5/23. He gets an MRI every eight weeks. So far, so good. Some days he feels great and other days he is miserable. He runs out of steam early in the evening and goes to bed early. Where was his tumor? Did he have surgerly? ...

          March 08 at 9:36 PM view post
          • hopepraylove has replied to a post on the message board

            Instructions say "swallow whole" and DO NOT break or open capsules.

            June 30 at 4:12 AM view post
            • hopepraylove has replied to a post on the message board

              I have never heard of a wild gene. It's possible that someone used the term to refer to the genetic alteration explained below (excerpt from https://en.m.wikipedia.org/wiki/Glioblastoma_ My limited understanding is that MGMT methylation means a GBM is more likely to respond to chemo and lead to a better outcome. "Another important alteration is methylation of MGMT, a "suicide" DNA repair enzyme. Methylat...

              June 30 at 3:47 AM view post
              • hopepraylove has replied to a post on the message board

                <3

                May 21 at 5:28 AM view post
                • hopepraylove has replied to a post on the message board

                  Mark, how is your wife?

                  May 16 at 7:27 AM view post
                  • hopepraylove has replied to a post on the message board

                    We need all the encouragement we can get. My husband (Grade 4 GBM diagnosis and surgery 3 months ago) started his first cycle of double-dose Temadar (340 mg for 5 days and 23 off) tonight and threw up violently a few hours later. We will get a scrip for Zofran tomorrow and hope to avoid that happening again. Keep the good news coming please.

                    May 16 at 7:24 AM view post
                    • hopepraylove has replied to a post on the message board

                      I saw it. The polio trial results are exciting -- they are using the word "cure"! -- but it has been successful in only a handful of patients. I'm thrilled to know the FDA is fast-tracking it and hope it will be available to my husband if/when he needs it (his diagnosis and surgery were in Feb '16).

                      May 16 at 7:14 AM view post
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