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Glioblastoma

always believe
Posts: 9
Joined: Aug 2010

As i am so blessed this week to celebrate another birthday with my mom i thought i should post her story to give encouragement. When she was first diagnosed i really held onto encouraging stories for hope. On 9/11/08 she had surgery on the right side of her brain to remove the tumor at the University of Pittsburgh hospital. They removed 95% of the tumor. We were told she would live 9-12 months. She had the gamma knife procedure and then she spent one week in rehab to recover use of her left side and was sent home and was able to walk with the use of cane. She improved every day! she then had radiation 5 x week for 6 weeks and also took temodor. she did develop a blood clot in her leg, but other then that she tolerated the radiation well just made her a little tired. After finishing the radiation the mri showed no sign of the tumor. the oncologist instructed her to take the temador only a couple times a month (this was the protocal). She saw her neurosurgeon for a follow up and he stongly advised her to begin chemo with avastin as he was quit sure the tumor would return with only the temador. We took his advice because he said this is the treatment plan he would follow if this was him mom even though it mean't switching oncologists and making a further drive. I had read that avastin is very aggressive, however,she has done great never sick her life has continued as normal!!! They have slowly decreased the doses and now 19 months later they are stopping the chemo because there has never even been a sign of that tumor since it was removed! So now they will just monitor her closely with mri's and we will continue to pray!! so don't be afraid of that aggressive avastin just go for it! its the best they have right now. hope this gives you the hope you need!

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

What a great story, and most definitely encouraging! May your mom have many many more clean MRI's!

stayingcalm

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

Hi Always believe, do you know if Avastin has been tested on children? Does your mom take the avastin and temodar together or just the Avastin? Do you know the dose she is taking?
My daughter has AA3 and her tumor was removed in March of this year. She did 42 days of temodar 160mg and 7 weeks radiation, we had 1 monthe off and now she is taking 360mg of temodar. 5 days on and 23 days off. I want to ask the doctor about the Avastin. I also heard that accutane along with temodar has made a difference and when I talked with my daughters oncologist he said that there wasn't a clinical trial done on kids and he felt that it might do more damage than good. I want to do whatever I can do for her. I have heard many good things about MD Anderson cancer center and I would take her there but, its so far away. We live in NH. Luckily we go to a teaching hospital and she goes to the Norris Cotton cancer center there. I'm sure her doctors would be willing to work with one of the Dr's from MD Anderson. Thanks for listening and I love to read these pos stories.

always believe
Posts: 9
Joined: Aug 2010

Hi Moms World,

My mom is taking avastin along with cpt 11. unfortunately i cannot remember the dose. she has not taken the temodor since her radiation treatments. I have not come across any info in regards to them treating children with avastin. definately ask the dr about this. if that dr says no ask another. thank God the neurosurgeon spoke up and recommended the avastin or we wouldn't of known any better. so many doctors will only follow the protocal and not try the latest and greatest treatments out there. have you checked into shriners? i hear that they have awesome doctors there. My mom is in PA and I am in San Antonio not so far from MD Anderson, but shes had such awesome care in Pittsburgh I see no need to bring her to Texas.

My best to you and your family on this courageous journey!

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

Thanks, I will mention the avastin and cpt 11 to the doctors.

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