Mom diagnosed 6/19/09 Glioblastoma in Dothan, AL

snidersweb21 · New User Joined: 23 Jul 2009 Posts: 2 Location: Dothan, AL

Hi, my mother was diagnosed with an GBM ungraded on 6/19/09. Dr. gave her 6 weeks untreated maybe a year with treatment. It is inoperable due to its location in the dominant hemisphere. This is a hard pill to swallow My mother is 60 years old and has always been a hard working individual and very strong! She started having impaired speech a few days before the diagnosis. We thought she was having a mild stroke. Since the diagnosis, We are on her 12th radiation out of 30, 140 mg daily of Temodar, and according to our Brain Oncologist in Birmingham, we should be starting Avastin next week. Everything has been happening very fast.

Currently she is very weak on right side, almost no speech or expression, motor skills are good except walking to the right a little. Everything got a little worse when radiation started, but I beleive this is due to the surrounding brain tissue swelling, which is normal. We are fortunate to have some really great doctors in the surrounding area. I will be more than happy to answer any questions or take any advice from anyone....thanks

kenobewan · Regular Joined: 10 Jun 2009 Posts: 25

My tumor is in both hemispheres but most of it is in my dominant left. The first surgeon removed 50% to leave with hemiparysis. A new one has said he can remove 95% of the remainder but leaving me hemiplegic. I still believe it is worth get at least a second opinion and look at your options.

A neurosurgeon who does a minimum of 50 a year would be good, if her current one doesn't do that many. Even better would be an opinion from a neurosurgeon at a brain tumor treatment center - see www.virtualtrials.com/btcenters.cfm - as experience counts and I notice that there are three listed in Birmingham.

Best of luck with what you decide!

conker1966 · New User Joined: 02 Aug 2009 Posts: 2 Location: Calgary

Hello, im sorry to hear of your tumor. it is a sad story, like my mothers. She is 59 turning 60 this oct. In feb /09 she was having what turned out to be seizures. To her they were not, they were just little chills, where she could still drive, walk ect.. they became more frequent in the day and lasted longer up to 5-8 mins. well by March 19th she was having surgery on a grade 4 GBM glioma brain tumor. she did i believe 23 treatments of radiation over a 5 week time slot. she came to my house after surgery till just after she finished radiation and lived with us. all she did was sleep, i thought her life was over and i couldnt stand her laying in bed the whole time. People would come to visit, she would get up and visit for a short time then back to bed. I didnt even get that much. I wanted to be the one to come visit her and have a good visit and leave thinking she was okay. she then went back home to her small town in the province of British Columbia. dad was ready to put her into pallitive care over there she just was not doing well at all, she wasnt bathing, eating anything, she would get up to smoke and have 2 bites and go back to bed. I got ahold of the cancer clinic here in alberta. (Tom Baker Cancer Clinic) and told them what was going on with my mom in BC and they called for her to be here in 2 days after i spoke to them. (she had a pediatrician for a dr. over there.) If shes going to palliative care then the cancer clinic is going to tell me not no pediatrician. we got her back here and now they have moved here to my town so i can look after her alot better. Funny thing is once her blood count was fine, and there was nothing more they the hospital could do for her, i told her it was time for her to begin her fight. That included eating right and getting out of bed and fighting to stay up and walk, her muscles in her legs and body had gotten very weak since feb till july 15th. I must tell you she is now doing amazing. She has just started her 5th day today of the Temadol, for the first of 6 months. she gets another MRI in Sept.. Her last MRI showed the radiation and chemo helped the growth. If we can keep it down she can have anywhere from 1-3 or more years with us. The way she was a month ago, they would have never given her the Temadol but because she starting fighting on her own and getting her strength back and her mind in mostly there now too. She really is doing fantastic. She has some short term memory problems but for the most part shes even doing well with that too. If you like we can stay in touch if this is close to the same cancer your mom has. encouragement and strength and prayers go along ways. Keep it up.
Connie
oh her tumor was left frontal, has the most beautiful scar ive ever seen, its like a big question mark infront and above her ear.

conker1966 · New User Joined: 02 Aug 2009 Posts: 2 Location: Calgary

Hello, im sorry to hear of your tumor. it is a sad story, like my mothers. She is 59 turning 60 this oct. In feb /09 she was having what turned out to be seizures. To her they were not, they were just little chills, where she could still drive, walk ect.. they became more frequent in the day and lasted longer up to 5-8 mins. well by March 19th she was having surgery on a grade 4 GBM glioma brain tumor. she did i believe 23 treatments of radiation over a 5 week time slot. she came to my house after surgery till just after she finished radiation and lived with us. all she did was sleep, i thought her life was over and i couldnt stand her laying in bed the whole time. People would come to visit, she would get up and visit for a short time then back to bed. I didnt even get that much. I wanted to be the one to come visit her and have a good visit and leave thinking she was okay. she then went back home to her small town in the province of British Columbia. dad was ready to put her into pallitive care over there she just was not doing well at all, she wasnt bathing, eating anything, she would get up to smoke and have 2 bites and go back to bed. I got ahold of the cancer clinic here in alberta. (Tom Baker Cancer Clinic) and told them what was going on with my mom in BC and they called for her to be here in 2 days after i spoke to them. (she had a pediatrician for a dr. over there.) If shes going to palliative care then the cancer clinic is going to tell me not no pediatrician. we got her back here and now they have moved here to my town so i can look after her alot better. Funny thing is once her blood count was fine, and there was nothing more they the hospital could do for her, i told her it was time for her to begin her fight. That included eating right and getting out of bed and fighting to stay up and walk, her muscles in her legs and body had gotten very weak since feb till july 15th. I must tell you she is now doing amazing. She has just started her 5th day today of the Temadol, for the first of 6 months. she gets another MRI in Sept.. Her last MRI showed the radiation and chemo helped the growth. If we can keep it down she can have anywhere from 1-3 or more years with us. The way she was a month ago, they would have never given her the Temadol but because she starting fighting on her own and getting her strength back and her mind in mostly there now too. She really is doing fantastic. She has some short term memory problems but for the most part shes even doing well with that too. If you like we can stay in touch if this is close to the same cancer your mom has. encouragement and strength and prayers go along ways. Keep it up.
Connie
oh her tumor was left frontal, has the most beautiful scar ive ever seen, its like a big question mark infront and above her ear.

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