Loading...

Gbm_Wife's Recent CancerCompass Activity

  • Gbm_Wife has replied to a post on the message board

    My husband is a 9 1/2 year GBM survivor.  He was diagnosed in 2004 and a neurosurgeon at MD Anderson was diagnosed in 2005.  He was able to do vaccines when they were unheard of. He basically came up with his plan and executed it.  I remember thinking I want my husband to try that vaccine. He wasn't even eligible for it, no one was.  You can read up on this NS his name was Samuel Hassenbusch. &nb...

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

      there is a good website about these issues http://brainhospice.com/

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

        my husband had them for weeks.  I thought they said it was a side effect from the decadron

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

          The great news is you are at UCSF.  They are one of the top BT centers. I would trust any recommendtion they gave me. My husband had his surgery and it grew back to the full 6cm before they could even start radiation.  He had two surgeries in one month. Most long term survivors have more than one surgery.  I didn't see how old your mom is but my husband was 42 years old.  Younger people statistica...

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

            It sounds like he is being weaned too quickly.  When you are on steroids for more than a couple of weeks they shut down your adrenal gland.  These are symptoms of that.  What helped my husband tremendously the last time he was weaned after 5 months was they gave him high doses of hydrocortisone to jumpstart his adrenal gland.  Then he successfully weaned off of decadron, then they  weaned him...

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

              we were told at NIH that lack of sleep (being overtired), alcohol and stress trigger seisures.

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

                Was he on steroids or being weaned off of steroids?  My husband had the vomiting issue when he was weaned too quickly.  They upped the decadron and weaned more slowly.

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

                  Dan, I sent you a private message the other day.  It should be at the top of the page under notifications.  I also sent you a message yesterday but it was never posted.  It went to the moderator because I put a link in the message.  Maybe it will show up eventually.

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

                    Hi Dan, I sent you a private message yesterday.  I don't know if you opened it yet.  Have you run accross virtualtrials.com It is a great website for brain tumors.  There is a bookilet with advise on newly diagnosed you can print or just read.  another great group to join is a yahoo group called  BrainTumor-Treatments it is really informative and there is one neurosurgeon that participat...

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

                      I am a little disturbed that the Dr thinks its ok to have seizures. Seizure medicine is kind of hit or miss.  My husband had grand mal seizures that took many trials with different meds before we found the dose and med that worked for him. What works for one might not work for another.  Seizures are very stressful for everyone involved and there should be an effort to get them under control.

                      view post
                      Loading...
                      Load more activity
                      Loading more activity

                      About Gbm_Wife

                      Caregiver
                      Brain Cancer

                      We care about your feedback. Let us know how we can improve your CancerCompass experience.