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SarahGrey's Recent CancerCompass Activity

  • SarahGrey has replied to a post on the message board

    Hello, I am so sorry for what you are all going through - none of it is easy...  :( The best thing you can do is google brain hospice timeline - there is a rough description of what happens in what order and roughly when things happen...  It was fairly accurate regarding my husband - of course everyone will be different dependent on so many factors and also where the tumors are located.  :( Regardin...

    October 19 at 10:55 PM view post
    • SarahGrey has replied to a post on the message board

      I agree that you should be in contact with hospice asap.  Hospice doesn't mean "the end is now" but think of them as "home care nurses."  They will help you both and be a constant resource.  They also deliver any supplies or meds you might need and can come out or are available to talk/ask questions anytime you usually need it.  Better to develop a relationship and comfort level with your nurse so...

      October 08 at 1:44 AM view post
      • SarahGrey has replied to a post on the message board

        Ah yes, my husband's was inoperable as well.  I have to say, though, that in the beginning of his fight, my husband lost use of half of his body and steroids and PT brought back use of the once-paralyzed side of his body.  As things progressed however, the dex couldn't do anything to fight the tumors, though...  Has the NO said anything about timing?  I know they mentioned hospice but definitely a...

        October 08 at 12:35 AM view post
        • SarahGrey has replied to a post on the message board

          Yes, but it definitely depends on how advanced things are.  When my husband was first diagnosed, he quickly lost use of the left side of his body.  Physical therapy helped him regain a lot of it, and most of it. As things progressed, he lost use of his left side again and then some...  PT was tried again but it was unable to help as the cancer was too far advanced.  :(

          October 06 at 11:50 PM view post
          • SarahGrey has replied to a post on the message board

            Hello, I'm sorry - so she is taking 40 mg a day, total?   If so, yes, that is a very high dose (at least in my experience).  My husband's NO didn't even want him on 4 mg a day (total).  I would guess around 12 mg a day (total) to be getting high. I'm so sorry for everything - the uncertainty is the worst part of it all.  In my husband's case, his doctors always seemed to downplay things and it ...

            October 06 at 11:46 PM view post
            • SarahGrey has replied to a post on the message board

              Hi Kat, Ohh yes - definitely call the NO asap.  Also, what is usually the common/best way to "fix" things is to take one high dose of dex (maybe 12 mg?) and then go to 4 mg twice a day for a few days and then slowly taper and hold at a low dose awhile.  And again, the sooner he takes it again, the sooner he will feel better.  BUT, it's not instant.  If there IS edema, it will take time to go down...

              October 06 at 12:32 AM view post
              • SarahGrey has replied to a post on the message board

                Hi Kat, Great, glad to help with the rice/yogurt!  :) Also, just a note about stopping dex - while my husband was alive, his NO tried to taper/stop the dex many times (too many) my husband always had problems (and it set him back so much).  Some people just need to always be on it - my husband was one of them.  But, some people don't need it.  I just want to give you some things to look out for ...

                October 04 at 11:25 PM view post
                • SarahGrey has replied to a post on the message board

                  Hi Kat, I'm sorry...  I don't have much to offer in terms of advice/help - BUT, two things. Can he eat yogurt?  He has some probiotics and might help him feel a bit better.  Plain yogurt with plain white rice is delicious and helps with diarrhea.  (hot, cooked rice) Also, you said "He stopped his dex".  Just checking - did the doctor taper and stop the dex or did your dad stop the dex on h...

                  October 03 at 11:51 PM view post
                  • SarahGrey has replied to a post on the message board

                    Ah good, I'm glad I was able to help you come to a choice! Everyone is VERY different (based on your own general health, age, type of tumor, location of tumor, size of tumor, is it operable or not...)  But my husband had widespread, inoperable GBM in the temporal lobe.  With radiation/chemo/avastin, he survived for 13 months before passing...   As for your biopsy, I don't want to say "things rarely g...

                    September 30 at 11:59 PM view post
                    • SarahGrey has replied to a post on the message board

                      I think because you are hesitant to say anything yet - then that is the right thing to do for your situation.  Your parents will worry and fear the worst and you won't be able to put any of their fears at ease because you won't know anything yet.  Given what they are personally going through, I think the added stress won't be a good thing.  AND, the added stress it will put on you won't be good either....

                      September 30 at 1:48 AM 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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