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marfunk84's Recent CancerCompass Activity

  • marfunk84 has created a new message board discussion

    So this may be a sensitive topic; it's definitely not one that most people here(or in general) want to think about, let alone talk about. I've posted to this site on and off over the years. My husband, Jamey, is coming up on his 7 year anniversary of being diagnosed with AA3. He was also just recently placed in hospice. His hospice referral wasn't so much out of dire medical necessity; I think it was more out of "gui...

    March 07 at 3:39 AM view discussion
    • marfunk84 has replied to a post on the message board

      My husband's been going for MRIs every 2 months for the last 6(almost 7)years after his AA3 diagnosis(and surgeries, chemo, rads, etc). What I started out thinking was that his MRIs would give us the answers we (and his treatment team) were looking for. What I found was, more often than not, the MRIs simply bring up more questions than offer answers. I don't know that this is true in everyone's case, but I go...

      January 09 at 6:15 AM view post
      • marfunk84 has replied to a post on the message board

        Hello, I'm curious who you've spoken to at Penn, if you don't mind me asking. My husband's AA3 and we've been at Penn throughout most of his treatment. We did a short stint at Jefferson which didn't work out well. 

        September 30 at 12:21 AM view post
        • marfunk84 has replied to a post on the message board

          Oh, Distancerunner--I've followed your brutally honest posts for a while now. I also noted your absence from this site and assumed a few reasons....I never assumed the reason you just provided. I'm glad to hear you're healthy and your wife is in a place that will address her needs. I'm in a MUCH less severe, but a similar situation to you. My husband's issues(diagnosed 3/2008) were fine until we opted for add...

          June 05, 2013 view post
          • marfunk84 has replied to a post on the message board

            My husband became too anxious on Ritalin, but is responding well to a drug called Provigil(modafinil). It works differently than a Ritalin or Adderal in that it's not a traditional "stimulant", so most people don't feel the usual CNS side-effects. Provigil does a good job keeping him awake--getting him motivated to do something other than watch "The Price is Right"---well, that's a different story(seriously...

            May 25, 2013 view post
            • marfunk84 has replied to a post on the message board

              Jeff. As a "young-ish" caregiver and parent to a 9 year old, I feel so horribly for you. My husband's journey has been much different than your wife's--his has been a slow and steady decline over the last year. There are no words for such an unexpected loss, but I echo what a few others have written. This is a brutal disease. It is unfair, unjust and ugly. Very few people probably understand what you're going...

              May 04, 2013 view post
              • marfunk84 has replied to a post on the message board

                Fascat-- Was just about to post since my husband is also a young AA3 survivor( he was diagnosed at 40, 5 years ago) when I read your status update. I am so very sorry for your loss. This is a horrific disease. I hope you have support systems, but if not, there are many compassionate people on here.

                April 26, 2013 view post
                • marfunk84 has replied to a post on the message board

                  Husband was diagnosed with AA3 on 3/14/2008. Went through standard treatment of Temodar, radiation, resection(never gave us a %of resection, but it wasn't total) Over the next few years, he had 2 more surgeries, gamma knife, clinical trial, and another round of Temodar. As bad as that may sound,he accomplished most of this while still working full-time, playing competitive soccer, working out and living a gener...

                  March 17, 2013 view post
                  • marfunk84 has replied to a post on the message board

                    Kathleen.. If you don't mind me prying--as a long-term survivor, what's your functioning level? You mentioned you were worse initially but recovered. Can you work? Do you feel "normal"? My husband battled hard for 4 years and lived an almost normal life, but the last year had been rough. Our NO has said that the longer he goes without improvement, the less likely it is he will improve. Did you prove otherwis...

                    March 15, 2013 view post
                    • marfunk84 has replied to a post on the message board

                      My husband's NO referred to radiation as "the gift that keeps on giving". He was originally diagnosed with AA3 almost 5 years ago at the age of 40. He's since gone through Temodar, radiation, 3 craniotomies, Gamma knife, clinical trial, Avastin, meningitis and hydrocephalus. His tumor has been stable for the past year, yet he continues to show cognitive decline. His short-term-memory is shot, his speech is o...

                      March 15, 2013 view post
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                      About marfunk84

                      Caregiver
                      Brain Cancer
                      After Treatment

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