One patient with glioblastoma still alive nine years later
by johngiustino on Wed Nov 14, 2012 04:15 AM
I was diagnosed with GBM October 2010 and I felt pretty grim at the time. Went through the standard treatment after a good resection, really nothing more except some supplements early on (PSK, melatonin) and every day fish oil pills. I post this to give people hope. I remember my first year thinking I would never make it this far, especially recurrence-free. I am happy to be able to spend the holidays with my family in peace.
by mltull on Wed Nov 14, 2012 04:25 AM
John - That is so awesome, and so encouraging! My hubby is three months post perfect resection, almost finished radiation, and continuing on with Temodar and Avastin. He has had no side effects, yet he feels that each special event is the "last" for him. Thanks for the pick-me-up for a cheerleader.
by Manojpadmanaban on Wed Nov 14, 2012 04:48 AM
Thank you for sharing this awesome news, This is so encouraging.
My dad was diagnosed with GBM in DEC 2011 and went thru standard procedure, surgery, radiation, temodar. He is having his 9th cycle of temodar 250 mg and his last scan showed remission of the residual tumor.
Can you please let me know how many cycles of temodar did you take. For my dad the docs said we will stop temodar and watch and I am anxious to know how is it for others.
by bernadettep on Wed Nov 14, 2012 05:39 AM
by johngiustino on Wed Nov 14, 2012 03:01 PM
I went through 12 cycles of 5/23 Temador from Jan 2011 to Jan 2012. That is what my NO recommended. My NO felt based on his experience and the literature 12 months was a balance between efficacy and possible side-effects (blood related cancers). I had excellent bloodwork throughout, but I was very happy to get off of it - I was permanently tired and nauseous at the end. I have read stories in this board of people who have been on it for 6 months to years. It is a controversial topic that has no proven answer; as with all brain tumor treatments, it depends on the individual. Consult an experienced NO.
by jon4156 on Thu Nov 15, 2012 02:45 AM
Congrats on your 25 month success! I wonder if you know if you are MGMT methylated.
by katiejensen on Thu Nov 15, 2012 05:54 AM
Congratulations to you and your family! You have given me hope. My mother was diagnosed with GBM Oct. 24, 2012 and we are just learning as we go. The doctors did not give us much hope but I have hope and will continue to persevere.
Thank you for giving me hope and strength!
by Amcf1 on Thu Nov 15, 2012 06:30 PM
by shucky on Fri Nov 16, 2012 03:35 AM
How old are you? I am 72 and am in my 14th month. Was told average for my age having gbm iv is 14 to 18 months but am doing well other than being tired, balance and memory issues. Age seems to play an important part in long term survival. Best wishes.
by Kerimac100 on Fri Nov 16, 2012 08:09 PM
Shucky, you sound so like me!
I am coming up 67 & have identical symptoms to you. The tiredness is the worst part for me & I know some people think it is just laziness, which hurts.
Keep on keeping on!
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