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SarahGrey's Recent CancerCompass Activity

  • SarahGrey has replied to a post on the message board

    Hmm...  Well, while it may not be 100% beatable to the point that it will go away 100% and you never have to worry anymore - try to think of it this way: You have been beating your cancer for the past 11 years.  Some people, many people, pass after a few months...  And you've been beating yours all this time.  That's wonderful!   Most people in the "real world" don't understand about brain ...

    Yesterday at 11:04 PM view post
    • SarahGrey has replied to a post on the message board

      Oh Matt...  I'm so sorry... My heart is breaking for you.  I've literally been sitting here several minutes, writing and deleting things as I can't find the right words... You and your family are in my thoughts and prayers - please keep us posted about your little one.  :( What is the next step?  CT Scan just to make sure everything is ok?...   Thinking of you guys, Sarah

      Thursday at 1:30 AM view post
      • SarahGrey has replied to a post on the message board

        Glad to help :) (ps - I couldn't remember, either.  I actually still had the schedule taped to the side of the fridge...)    ;) Wishing you all the best!

        view post
        • SarahGrey has replied to a post on the message board

          Hi Mollie, My husband had the following schedule (from his NO): - finish eating dinner at/by 6:00 - zofran at 8:30 (so, 2.5 hours later) - temodar at 9:00 (nothing to eat after this) * fruits, veggies and lots of water help with constipation...  And NO rice - "binds" you up...   :( Take care, Sarah

          Wednesday at 11:26 PM view post
          • SarahGrey has replied to a post on the message board

            Hi Chris, I'm so sorry...  My husband's tumors were inoperable - but I have read here that the recovery time following resection takes a long time.  If you think of what his poor brain has been through, first with the tumor and then with the surgery...  it needs time to heal a bit. What I'm most curious about is, why didn't his doctor(s) have him admitted to a in-patient rehab facility?  My husb...

            April 15 at 3:27 PM view post
            • SarahGrey has replied to a post on the message board

              PS - just a side note; the handicapped spots are great too, because they are usually a bit wider.  If/when you guys want to use a transport chair (just for ease/safety sake) the extra room between spaces makes all the difference.  ;)  

              April 15 at 3:12 PM view post
              • SarahGrey has replied to a post on the message board

                I'm so sorry, Audie... The nurse is right - your mom can hear everything...  Please hold her hand, talk to her - even joke a bit if you can...  Tell her everything you can think you will ever need to tell her...  Just keep her company and keep her comforted.  Maybe even play some of her favorite music softly in the background - I'm sure she'll appreciate it so much...   Helping her have a p...

                April 14 at 9:52 PM view post
                • SarahGrey has replied to a post on the message board

                  Hi Cathy, Ah geez, I can't even imagine how scary that must have been for you both!  :( You guys don't have a handicapped tag, right?  It makes such a difference and surely your husband's doctor would sign the form for him to be able to get one...  Our tag saved the day many times... Wishing you all the best, Sarah

                  April 14 at 9:48 PM view post
                  • SarahGrey has replied to a post on the message board

                    Hi EL, You are correct...  While some people are fine, even good, for years - overall, the average survival for people with GBM is around 14 months.   Again, that's the overall average...  So some people pass much sooner - others awhile longer... For many, there isn't even a "2nd time around."   :( You likely don't need to give her any sad info - she probably has been told so much by her docto...

                    April 14 at 2:22 AM view post
                    • SarahGrey has replied to a post on the message board

                      The fatigue can be a bunch of things -  The tumor can definitely cause it (if she currently has one, or, if she had one and had it removed, that can also cause fatigue). Keppra definitely causes it.   Radiation to the brain definitely can cause long-lasting fatigue as well.  :(   (some people even suffer from necrosis because of the radiation)   :( Honestly, all three separately can cause...

                      April 13 at 11:42 PM view post
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                      About SarahGrey

                      Caregiver
                      Brain Cancer

                      My husband was diagnosed with inoperable GBM (temporal lobe) in May, 2012
                      - Whole brain radiation
                      - Temodar (discontinued in Jan, 2013)
                      - Avastin
                      - Restarted Temodar on a daily, low dose
                      - Passed to Heaven after a 13 month battle...

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