Gbm 4 Right Temp Lobe ! No Prob......

I'M NOW ON MY 18TH CYCLE OF TEMODOR,HAD MY GRADE 4 REMOVED SEPT 06 ,THEN 30 DAYS OF RT ,TOLD FROM BIOPSY IT WAS A MIXED GLIOMA 4,AND GIVEN A POOR PROGNOSIS ?.I THINK THEY HAVE TO SAY THESE THINGS TO COVER THEMSELVES,AS I'M FINE,I'VE NEVER HAD SO MUCH AS A HEADACHE,IT MAKES ME WONDER IF THE BIOPSY WAS READ CORRECTLY 7 CLEAR MRI SCANS NOW, I HAD WHAT WAS THOUGHT TO BE A BEGNIGN TUMOR FOR 6 YRS UNTIL THEY DECIDED TO GIVE ME THE OPTION OF REMOVAL,THEY SAID THESE BEGNIGN THINGS HAD A 20PC CHANCE OF TURNING INTO CANCER SO I AGREED,THE OP WASNT CONSIDERED URGENT SO WAS DONE 9 MTHS AFTER THE CHAT WITH THE CONSULTANT,SO APART FROM SOME OF THE MINOR EFFECTS FROM THE MEDICATION AND RT I'M FINE,SO THE QUESTION IS DO YOU HAVE THE SAME AND FEEL WELL ?OR HAVE YOU BEEN MIS DIAGNOSED AS A GRADE 4 ?AFTER ALL THERE ARE MANY PEOPLE WITH CANCER THAT LIVE TO A RIPE OLD AGE BEST TO YOU ALL JOHN.....

Your story is one of good news! Congrats! It is nice to hear something positive and inspiring. Best of luck to you.

God Bless.

Chris 

 

On 4/16/2008 John Bham uk wrote:

I'M NOW ON MY 18TH CYCLE OF TEMODOR,HAD MY GRADE 4 REMOVED SEPT 06 ,THEN 30 DAYS OF RT ,TOLD FROM BIOPSY IT WAS A MIXED GLIOMA 4,AND GIVEN A POOR PROGNOSIS ?.I THINK THEY HAVE TO SAY THESE THINGS TO COVER THEMSELVES,AS I'M FINE,I'VE NEVER HAD SO MUCH AS A HEADACHE,IT MAKES ME WONDER IF THE BIOPSY WAS READ CORRECTLY 7 CLEAR MRI SCANS NOW, I HAD WHAT WAS THOUGHT TO BE A BEGNIGN TUMOR FOR 6 YRS UNTIL THEY DECIDED TO GIVE ME THE OPTION OF REMOVAL,THEY SAID THESE BEGNIGN THINGS HAD A 20PC CHANCE OF TURNING INTO CANCER SO I AGREED,THE OP WASNT CONSIDERED URGENT SO WAS DONE 9 MTHS AFTER THE CHAT WITH THE CONSULTANT,SO APART FROM SOME OF THE MINOR EFFECTS FROM THE MEDICATION AND RT I'M FINE,SO THE QUESTION IS DO YOU HAVE THE SAME AND FEEL WELL ?OR HAVE YOU BEEN MIS DIAGNOSED AS A GRADE 4 ?AFTER ALL THERE ARE MANY PEOPLE WITH CANCER THAT LIVE TO A RIPE OLD AGE BEST TO YOU ALL JOHN.....

 

I was Dx with GBM IV June 2007. 2 craniotomies, radiation, temodar and gliadell wafers. 10 months later my right parietal tumor is stable and not growing. The small inoperable one is also stable.

 

I am currently taking avastin only once every 2 weeks.

 

The longer you survive this disease, the better yur chances are that you will live at least several more years.

 There is no cure, but many of us are still fighting and going strong 1-3 years into this.

 

I am not going down without a fight.

This thread of messages leads me to note something I've been wondering for a while. My Mom was diagnosed w/ GBM 4 in October of '06, right temporal lobe. Successful resection, but not so successful course of Temodar and radiation (MRI showed progressive regrowth, although slow)... she hated the regimen and decided 4 months in to the 23/5 plan she'd had enough. At the time, her neurosurgeon was recommending another resection. He warned her that stopping treatments then would put her back on the fast track (3 month prognosis). She's been off chemo for 10 months now and is relatively healthy. If anything, she is sleeping much less than when she was still on chemo. It makes me wonder if either right temporal tumors are less debilitating or if she was misdiagnosed. She's never had a seizure, whacky blood counts, not even a cold. I can't tell you if the tumor is still growing because when she stopped treatments, she stopped MRI's too and does not care to check out what's going on up there. The deficits she has have remained unchanged since a notable decline in July '07... sensory loss on left side and unsteady gait. Memory loss has been an issue since the resection. Otherwise she is stock steady and will attend her first grandchild wedding next week. We never thought that would happen a year ago!!   

It's good to hear some positive stories. Unfortunately, there aren't many happy endings with GBM. Count your blessings with every clear scan.

My father's MRI's were clear for about a year after his initial surgery. There can be these periods of grace where nothing is growing/getting worse, and we have to make the most of them when they happen.

His is back now, and we're just trying to appreciate each day we have.

Good luck, I hope things stay clear for you.

 

On 4/18/2008 Hyacinths wrote:

It's good to hear some positive stories. Unfortunately, there aren't many happy endings with GBM. Count your blessings with every clear scan.

My father's MRI's were clear for about a year after his initial surgery. There can be these periods of grace where nothing is growing/getting worse, and we have to make the most of them when they happen.

His is back now, and we're just trying to appreciate each day we have.

Good luck, I hope things stay clear for you.

sorry i was just trying to keep everybody happy,there ARE people that get through this unfortunately most messages on the site are tales of wo ! we may have a different approach in the uk ,but i would like to think that all in the us share in the improved treatments and trial results etc we have many people here without any re growth 6yrs on and much longer,so to sum up yes i am a realist but we need to keep our chins up maybe help each other but not come on the site and depress everyone lets have more good news ,i think thats what we are all use the site for best to all john...