Info on Glioblastoma

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Info on Glioblastoma

by Sandy_s_8 on Mon Dec 12, 2005 12:00 AM

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My father was diagnosed with a glioblastoma in early Nov. Had surgery to remove as much of the tumor as possible, just finishing his first week of radiation and temador. Just wondering if anyone out there has any experience with the natural supplements that can be used with the radiation and temador? There are some promising survivor stories on this site and some heartbreaking stories as well. I had never even heard of this until my father was diagnosed, and I've done as much research as I possibly can but am always looking for more.It is such an awful disease and people don't really understand what you are going through. Any info anyone can share with me will be greatly appreciated. God Bless Us All that are affected by this in one way or another. Sandy

Glioblastoma

by Marmie on Mon Dec 12, 2005 12:00 AM

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Hi Sandy, Sorry to hear about your dad. There seems to be alot of debate about supplements. My husband's doctor doesn't want him to take anything during his five days of Temodar a month because he believes that it may interfere with the chemo. It has been our experience that most medical doctors don't want to talk about supplementation. Alot of websites I have researched concerning herbal supplements are quite expensive and who knows if they even work or will counteract with treatment. I know alot of people do take various things, and they may be able to help you with positive results they have had. My husband was dx. in January 05, had total resection, radiation, and now on the five day Temodar regimen. So far, no regrowth. Take care. Patty

Info on Glioblastomas

by Sandy_s_8 on Mon Dec 12, 2005 12:00 AM

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Hi Patty, Thank You for your response. We have found the same thing, my dads dr. doesn't want him to try anything while on the temodar. But his radiologist said supplements won't affect his treatments, but to follow the oncologists orders.I've heard so many people say supplements were the winning factor in their personal battle, but of course we don't want to do anything that will interfer with his current care. I think a person just grasps at straws, you hear good things about this and good things about that and you would do anything to save that precious life.Thank You Again and I'll put you in my prayers. God Bless! Sandy

Gbm Info

by Brainychick on Mon Dec 12, 2005 12:00 AM

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Sandy, I was diagnosed with a Glioblastoma (GBM) in Oct. 2003. After surgery I went through radiation and temodar but was also told not to take supplements. I did join a list serv style support group through www.thebraintrust.org There are around 800-900 people on this email list including survivors (of many different brain tumors), caregivers, and medical proffessionals. These people have been a wealth of information.

Info on Gbm

by Hopefully on Mon Dec 12, 2005 12:00 AM

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Hi Sandy, My mom was dx 7/05 and was told not to take supplements mostly because she is starting a clinical trial at Duke and no other form of drugs(vitamins,etc.) could be in her system at the time of the trial. We always looked into supplements and we found that a diet of soley certified organic food was the way to go. No dairy, no soft cheese, white foods(sugar,flour,rice,etc) and most important we learned from a doctor that shellfish actually "fed" the brain tumor and should be avoided. There are so many benefits from a change in diet and would recommend you let your dad know (or just change his diet for him) All the best, Dana

Info on Gbm

by Garland on Mon Dec 19, 2005 12:00 AM

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dana...is that diet in written form or is it of your making?

Info on Gbm

by Hopefully on Mon Dec 19, 2005 12:00 AM

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Hi Garland, The written info such as avioding "white" foods (bleached flour, white pasta, soft and semi soft cheeses and most importantly aviod shellfish completely; shellfish is said to "feed" the tumor. She also avoids caffine. My mom received a pamphlet from her surgeons office after her tumor was removed and these things were listed. I am going to visit her over the holiday week and will ask if she held onto it. ( I'm sure she did) and can email more of the foods to be avoided. Foods with a plus are the darker the better. I found her black grapes and make her stews with dark purple cabbage, etc. Hope you are well, my mom started her second round of the mega dose of chemo today and I will be seeing her on the 27th. She has not lost her hair nor has she experienced too much naseau so far, so maybe her diet has something to do with it. (or she's just lucky) I will let you know more about her diet upon my return. Have a wonderful holiday season. Thoughts and prayers, Dana

Food/glioblastoma

by Kathy_c on Sat Dec 31, 2005 12:00 AM

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Hi....my son was diagnosed in 2003 with glioblastoma. He had a 'complete' resection and radiation...temador...and the neurosurgeon told me no caffiene, sugar etc...so we did away with all that, no small feat in a then 10 1/2 year old....also, I was told no supplements while taking temador. Almost a year to the day he had been diagnosed, the tumor came back...it was removed again...gliadel wafers were placed in the area where the tumor had been....and he looked at me and said...'Mom, no more organic foods, no more special diets, I just want to be a normal kid...' well, I have to admit, I did everything I was suppose to do...I spoke to a biochemist who said there is no special diet for glioblastoma, just common sense...and I looked this up on other sites and pretty much got the same answer...well, this second go around, the dr.'s at Miami Children's gave my son 3-4 months to live...that was May 2004....and here it is almost 1/06......he gets MRI's every 6 weeks, has been on protocol from Duke this time around...CPT-11, Tamoxifin (200mg's a day) he gets it (the chemo) every Friday, through his port, 4 weeks on 2 weeks off....and, he eats what he wants...though he does not like chocolate and does not drink soda per se....maybe at a birthday party, I don't buy it....but he eats pizza and other kid stuff.....I just don't know what believe, just that each of us is physiologically different then the next. I thank God everyday I have him. His next MRI is 1/12/06. www.caringbridge.org/fl/david

Glio.

by Erica on Wed Jan 04, 2006 12:00 AM

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HUGS TO YOU!! I was in your shoes almost exactly one year ago. My father was diagnosed Jan. 8th last year. I was so determined in finding better answers than what our local docs advised. I spent countless hours on the internet till my eyes were swollen and bloodshot. The stats were very depressing especially since in my fathers case, surgery wasn't an option. His tx was radiation/temador. He has spent every day like it is his last. Untill recently (2 days ago) he hasn't had any pain. The last MRI showed the tumors progress. I am expecting that this will end soon. On the bright side of things, he has had a chance to right all his wrongs, have full meals with family and friends, take care of all his unfinished financial business, and that is something most people don't get a chance to do. He has already beaten the odds. I hope my point of view helps. It took a long time for me to feel this way about it. Good Luck to you and your Dad. Erica

Foods

by Fnggbm on Fri Jan 06, 2006 12:00 AM

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My dad was diagnosed in 9/04 with a gbm and they gave him 8 months. He eats everything and still rockin. Tell your son to just keep laughing and doing what he loves. my dad does and that is the best medicine. good luck and God bless
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