One patient with glioblastoma still alive nine years later
by pdean on Tue Mar 08, 2011 02:43 PM
GBM 4 has reoccurred - left temporal - what is the estimated time prognosis -
by future2020 on Tue Mar 08, 2011 02:46 PM
Ask about AVASTIN - this is the one that is supposed to stop the blood vessels from growing around the tumor and thus hopefully starving the tumor to STOP it from growing. I am hoping to get my husband on that in the coming weeks...
by I_love_Gary on Tue Mar 08, 2011 03:02 PM
More than one person has fought more than one recurrence. Like at the original time of diagnosis, the prognosis is only a guess based on others experiences. We know from day one of the gbm fight, that there will be more battles fought before the war is won or lost, so look at it as the next skirmish, don't focus on when the final battle will take place.
My husband also is into a recurrence and we are exploring the options, so I understand your fear. But we can't really live if we are waiting to die.
Hope is not lost. DL
by Hamiltonb on Wed Mar 09, 2011 05:05 AM
my mom too is going through this.
She finished her treatment, radiation paired with temodar, on Feb 5. An MRI about 3 weeks later showed little to no change in the mass, and another small mass had grown - so not the best of news! haha.
We are hearing from sloan kettering on Monday or Tuesday about their recommendations and have an appointment with Johns Hopkins on Thursday (3/17). We want to get all the options and then as a family make a decision. Our current oncologist mentioned avastin, but we wanted to see if there were other options out there - its always good to get a second and third and fourth and millionth opinion.
Hope everything works out for your family. My mom has it in the same spot...left temporal. how is your family member doing? any speech problems? memory loss?
Prayers for your family,
by tjspangler on Wed Mar 09, 2011 01:04 PM
I agree with DL, you can't always wait for death. It is very hard to say and even harder to do for the patient. But after a GBM diagnoses that is all you have is today. My husband has had one recurrent surgery and it is still growing and there is a 2nd tumor now. We just started Avastin Monday March 7th after Temodar and Radiation failed. But this avastin is suppose to give us some more time due to it starves the blood vessels which will help the growth deminish and clean up the necrosis. It doesn't work for everyone, but I know alot that it has worked for, so we are trying it.
Stay positive and try to focus on the good days. When a bad day comes your way use it for resting. We find that eating better(organic vegtables, as least amount of sugar you can per day, cancer loves sugar) and going on short walks if possible are wonderful. Some days walks don't happen he is too tired, but I cherish them when we do. At least find something that makes you happy and continue to do it if for a little bit of time. Any normalcy helps with all the changes that patients have to walk through.
I wish you all the compassion, and understanding needing to walk you through this. Google things, talk with everyone, stay on this site and ask questions, or just read so you get a better understanding that this is an individual cancer, lots of surviors with this.
by heart_and_soul on Wed Mar 09, 2011 03:28 PM
I understand wanting to know. But there are so many possibilities, and nobody's tumors are exactly like someone else's. Still, we want to know. For some of us (true for me) having a sense of the timeline meant I could throw myself into Andy's LIVING with no holding back. Having a sense of the days being numbered (although, still, there was no sure way to know) meant I stopped worrying about money and his smoking and drinking. I got my head screwed on 100% right for loving, I guess you could say.
So for what it's worth here's his timeline:
Andy had several tumors in the left temporal lobe, dx Jan 09. They reccurred 9 months after dx, during the 5/23 Temodar phase. He switched to Carboplatin and Avastin. Held the growth for 3 months. Then more progression, too deep and widespread for surgery or rad. Switched to CCNU and Avastin for three months. No help, no good for him. Went off all treatment except palliative and died May 2010, 17 months after original dx and 8 months after first recurrence.
Dance like nobody's watching!
Love and hope, Sarah
by lovingmom on Thu Mar 10, 2011 01:38 AM
Is this the same spot as original tumor? Was the first tuomor completely resected? Is another resection an option?
by edwardw on Thu Mar 10, 2011 02:19 AM
I was diagnosed in '07 with GBM in the left frontal lobe. I had surgery then Temodar with radiation followed with chemo by itself. I had a recurrence in '09. Surgery then Gamma knife and still on Avastin. So far no new growth. Don't give up!!!!
by lovingmom on Thu Mar 10, 2011 02:27 AM
Its great hearing the positives!! Thank you!
On Mar 10, 2011 2:19 AM edwardw wrote: I was diagnosed in '07 with GBM in the left frontal lobe. I had surgery then Temodar with radiation followed with chemo by itself. I had a recurrence in '09. Surgery then Gamma knife and still on Avastin. So far no new growth. Don't give up!!!!
On Mar 10, 2011 2:19 AM edwardw wrote:
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