One patient with glioblastoma still alive nine years later
by CharlieBrown on Wed Nov 14, 2012 12:08 PM
by CharlieBrown on Wed Nov 14, 2012 12:10 PM
by siblingof on Wed Nov 14, 2012 01:46 PM
by johngiustino on Wed Nov 14, 2012 03:16 PM
Are you being treated by a neuro-oncologist? If not, getting a consultation from an experienced NO may be helpful. In my experience a neurologist + oncologist does not equal a NO.
by jon4156 on Thu Nov 15, 2012 02:41 AM
I would seek another opinion at a different hospital, if possible. It would be nice to have another set of eyes look over the test results.
by CharlieBrown on Thu Nov 15, 2012 02:46 PM
by phyllischarles on Sat Nov 17, 2012 02:26 AM
Your post has been so comforting to my husband. He was diagnosed 4 weeks ago. He had surgery on October 25, 2012. 99% was removed he starts 6 to 8 weeks chemo & radiation on Monday. This is happening all so fast that we don't know what to expect or really what to dream or plan for. We know everyone will respond differently but your posts gives us hope.
Thank you Phyllis & Charles Rice
by Luvingwife on Sun Nov 18, 2012 08:32 PM
Our experience is similar to your dad's in that my dh also had a period of time when it seemed he had symptoms of tumor growth (no seizures, though) and all the scans showed no tumor progression. The dr concluded it was/is damage from radiation (in 2004) and the years of differet chemo treatments. I agree with the other poster who recommends a neuro-oncologist, if you are not already with one. Also keep in mind that the anti-seizure drugs cause some drowsiness and I believe that this also contibutes to the confusion and inability to focus and engage that we see now. Also, the chronic fatigue is an issue that effects his quality of life. Franklih, dh is much more disabled now than when he was first diagnosed, when he was having radx, or any of the chemo treatments. The disease and its treatments have had a cumulative effect.
dh diagx gbm4 May, 2004; disease currently 'stable'
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