kat54

kat54's Recent CancerCompass Activity

• kat54 has replied to a post on the message board

  WXYZ I eat whatever I want and always have.  In the beginning I didn't have a computerto see all the diet rcommendations ifigured if I only had 6-9 months I was going out happy and ate lots of chocolate and drank lots of the Real Thing Coke!  Lots of PB&J wth gallons of chocolate milk!  

  Yesterday at 11:11 PM view post

• kat54 has replied to a post on the message board

  Congratulations!!  I am 20 yr survivor keep up the good work.  It's so great to see so many more long term survivors out here, Kathleen

  Friday at 5:46 PM view post

• kat54 has replied to a post on the message board

  Sarah, I am so sorry for your news.  can they do cyberknife on the brainstem? I am glad your Dr. will fight wth you.  I had one send me home to "go peacefully"  in 1995. Kathleen https://www.facebook.com/BaileyMedicalCenter/posts/101529192  

  Friday at 1:39 PM view post

• kat54 has replied to a post on the message board

  MY GBM was in my right temporal lobe.  My vision was fine after my first surgery 1993.  After my second surgery 1995 I was totally blind for several months then one day like a switch turned on I could see but no left peripheral vision either side.  Sometimes when I am tired my eyes and brain don't communicate well.  even with one eye closed or covered I have double vision. it is impossible to read...

  May 19 at 2:14 AM view post

• kat54 has created a new message board discussion

  I recently went for my yearly MRI and praise God all is still good! I mentioned to the hospital staff I wish they had acknowledged May being Brain Cancer Awareness Month. They set up a facebook blog page for me.  Check it out at this link.  Kathleen   https://www.facebook.com/BaileyMedicalCenter/posts/10152919209110425

  May 18 at 12:08 PM view discussion

• kat54 has replied to a post on the message board

  I take tegretol XR 6 100mg/day.  I can go up to 9/day if needed.  most of the time 6 work.  I take them in the am so they reach peak when I am sleeping.  I don't feel fuzzy like on dilantin or neurontin

  May 13 at 3:30 AM view post

• kat54 has replied to a post on the message board

  I qualified for ssdisability back when 1st diagnosed with GBMIV in 1993  after 2 years I was able to get medicare at 40.  I have a medicare supplement policy and still see the same dr's as when I was covered on my husband's employer ins.

  May 11 at 4:32 AM view post

• kat54 has replied to a post on the message board

  Sleeping is the brain's way of healing.  I am 20yr GBMIV survivor.  In the beginning I slept alot too. My family let me sleep as needed. I believe that helped my brain heal as well as it did.  Sometimes Dr.s put people with brain injuries in a medical coma so the brain can heal.  Think of the trauma your fiance's brain has recently experienced with surgery, chemo and radiation. many longtime survi...

  May 10 at 12:55 PM view post

• kat54 has replied to a post on the message board

  When I was diagnosed GBMIV in 1993 chemo was not effective for brain tumors.  I only did radiation and stereotactic radiosurgery. I had two surgeries 1993 and 1995.  20 years later I am still here.  I have a few problemsbut not enough to regret radiation.  My tumor was in my r temporal lobe.  I wish the best for you both.

  May 08 at 7:46 PM view post

• kat54 has replied to a post on the message board

  it's on my FB page Kathleen Holt Rhodes

  May 04 at 2:17 AM view post