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SarahGrey's Recent CancerCompass Activity

  • SarahGrey has replied to a post on the message board

    Hi Melanie, My husband's tumor(s) were in a place that caused horrible anxiety - that was one of his initial symptoms.  And so from the start he was on anti-anxiety medication.  Even when his dex was high (12 mg or so) he never was irritable or anything.  Is your husband on an anti-anxiety med, and if not, maybe his doc can prescribe it?  If it takes the edge off, it might help him feel enormousl...

    Yesterday at 12:03 AM view post
    • SarahGrey has replied to a post on the message board

      Wildrose, Ah wow - I've felt the bed move too, sometimes!  And it's always as I'm drifting to sleep (but still very much awake).  Scared me the first time but exactly like you, it made me smile after that.  Definitely a comforting feeling... Thanks for sharing! Sarah

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      • SarahGrey has replied to a post on the message board

        Hello Jan, I'm so sorry...  I lost my husband to brain cancer about a year and a half ago and it's devestating, to say the least... One piece of comfort I found was in the notion that we couldn't/can't change the outcome - but the important thing is that we were there for them when they needed us most.  While I couldn't save my husband despite how very much I tried, I was able to make him feel so utterly ...

        March 01 at 8:19 PM view post
        • SarahGrey has replied to a post on the message board

          Hello, The side effects of WBR can be significant and long-lasting.  Google it and this website and a bunch of posts will come up... I think your best course of action is to ask your radiologist and also your oncologist for a serious and very honest opinion/guesstimate of 1) how much benefit will the WBR treatment potentially add and 2) would they do it to themselves if in the same situation? For number 2, yo...

          March 01 at 8:14 PM view post
          • SarahGrey has replied to a post on the message board

            Noooooo...  if it's working for you, stay on it.  Switching anti-seizure meds is NOT an easy thing (the tapering of the Keppra and increasing of the new med is very difficult and can take a month to do).  It's also potentially dangerous because you don't know if the new med will work for you.  And then to have to taper back to the Keppra would be awful.  If your current med is working for you...

            February 18 at 2:38 AM view post
            • SarahGrey has replied to a post on the message board

              Hi Waverider, In my experience with my husband and his NO continually trying to get him off Dex, it sounds like your Dad's dose is not high enough.  What my husband's NO always did was give him one "big" dose (like 12-14 mg) and then do 4 mg TWICE a day for a few days.  And it would still take a week to see improvement.  (because it's not an automatic thing, the brain needs time for the swelling to go...

              February 18 at 2:36 AM view post
              • SarahGrey has replied to a post on the message board

                Hello Wildrose, Oh wow...  I'm so sorry...  :( I think that if a lot of people in the family already know, then maybe tell your kids.  It doesn't have to change the way they feel about their father - they can see what happened as a mistake.  (maybe?) My thought is, if the two brothers are good people then it could be nice for your kids to know them.  (and vice versa) I personally would wa...

                February 06 at 12:21 AM view post
                • SarahGrey has replied to a post on the message board

                  I'm so sorry for everything... May you both find peace now...  Please be gentle with yourself and don't expect too much from yourself.  Grieve how you need to grieve and do what you need to do... Thinking of you, Sarah

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

                    I'm sorry, Jennifer... From what my husband went through (which sounds similar to yours) it was about a week after he stopped eating, I think... And all his stats were perfect until right about the end :( Keep talking to him - I have no doubt it helps... Thinking of you guys, Sarah

                    February 05 at 12:37 AM view post
                    • SarahGrey has replied to a post on the message board

                      I'm so sorry, Kris... It will be soon...  Please keep holding his hand and talking to him.  Definitely he can still hear and understand everything - please keep talking to him.  Happy things, funny things if you can...  Let him know you and the kids will be ok... Thinking of you guys, Sarah

                      February 03 at 12:28 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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