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Fearless Sister - GB 4 - any stories to share?

Posts: 1
Joined: Mar 2006

My sister is battling GB 4 at the age of 27. It has been an amazing journey. She is on Temador and always looking into alternative treatments. Ambrotose has been a huge help to her. I have become a healthier and all around better person because of her and all I have been learning about this cancer. I am wondering about any experiences other people have had alternatively or otherwise with battling a brain tumor. We have met survivors of 2 months to over 16 years, and hope to start a foundation for patients living with brain tumors and need financial assistance to keep living and fighting. Wishing you all of the best!

jbb's picture
Posts: 12
Joined: Apr 2005

Hi! I'm 27 years old and was diagnosed with GBM4 one year and four months ago. I've had an emergency craniotomy and a lifetime dose of radiation. I have not started any chemo yet and still I've remained stable, I have been free of meds since April -05!
I don't do any supplements or follow any remedies. All I do is eat healthy organic produce and do lots of exercises (swimming and running). I don't know what, if anything in particular has left me so healthy, maybe just luck? My doc says to expect recurrence, I expect anything, it could come tomorrow, it could come in another lifetime...

Posts: 43
Joined: Sep 2004

Hi kellrod - sounds like your sister is very courageous. You can find links to additional sources on this webpage www.cancergen.com/brain

stevegbm49's picture
Posts: 3
Joined: Sep 2005

hi.im 49 and was diag'd gbm4 almost a year ago.06/03/05.i went thru temodar,radiation and was put on cpt-11 and avastin by my oncologist which reduced my tumor.in nov i had an MRI which indicated a possible recurrance which is why the doc changed me to cpt-11 and avastin.i had trouble tolerating the IV delivery so i am now on CCNU,an oral medication.so far it seems to have been effective.i have had another clear mri since going on this med.thats 2 in a row,looking forward to more of those!

stevegbm49's picture
Posts: 3
Joined: Sep 2005

forgot to mention after initial MRI revealing a tumor i had a craniotomy.suppossedly my doc got most of it.

Posts: 1
Joined: May 2006

Hi there
my cousin has GBM Grade 4- he is 26 years old- got diagnosed in March 06- he finished radiation and chemo. He is going for a MRI on June 7th to see it has grown back . He was told he would have to be on chemo for one year and a 1/2. He does look so good and is amazing mental shape- it amazes me how he gets the strength- we are very close - he is like a brother to me so I know how you feel and what you are going through. This a terrible disease and I am scared all the time for him- but you need to believe she is going to be okay- a healthy diet is very important.. she needs to stay away from sugar- this is really bad for a GBM. I am here if you need to talk!

Posts: 1
Joined: Jul 2006

Hi, My brother was diag. Sept 2005 w/ GBM. He had resection w/ radiation and Temodar. Put on steriod for brain swelling which sent blood sugar to 368. Two days on Good carb, Hi protein, lo fat, lots of water diet, blood sugar lowered to 90. It's been stable since. Tumor grew back Dec 2005, put on gleevec Jan 2006 bad allergic reaction to gleevec, put back on Temodar Feb 2006, tumor shrank by a third Mar 2006, tumor shrank by half May 2006. Next MRI in August 2006. CBC, renal, and liver functions are good. His chemo is once a month for 5 days.
Is anybody having problems with potassium dropping when you start your Temodar?

Posts: 5
Joined: May 2006

Hi. I've had a AA (Grade 3) since February this year. Surgery, radiation, and chemo have been working so far. Best of luck to your sister; a positive attitude is the best medicine, for you and her!

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