CancerCompass message board discussion started by Sandy s. on 12/12/2005 http://www.cancercompass.com/message-board/message/all,3722,0.htm Sat, 22 Nov 2008 00:00:00 GMT Sat, 22 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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 Sandy s. Mon, 12 Dec 2005 00:00:00 GMT 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 Marmie Mon, 12 Dec 2005 00:00:00 GMT 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 Sandy s. Mon, 12 Dec 2005 00:00:00 GMT 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. Brainy_chick Mon, 12 Dec 2005 00:00:00 GMT 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 Hopefully Mon, 12 Dec 2005 00:00:00 GMT dana...is that diet in written form or is it of your making? Garland Mon, 19 Dec 2005 00:00:00 GMT 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 Hopefully Mon, 19 Dec 2005 00:00:00 GMT 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 Kathy c. Sat, 31 Dec 2005 00:00:00 GMT 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 Erica Wed, 04 Jan 2006 00:00:00 GMT 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 Fnggbm Fri, 06 Jan 2006 00:00:00 GMT Erica, Sorry to hear about your dad, atleast surgery was an option for us.This is the toughest battle I have fought in my life so far.We've got wonderful family and friends but it still seems like we are alone in this fight.Everyones life goes back to normal (whats normal?) after they have visited and we still wake up every morning with this awful disease. Sometimes it is too hard for me to spend alot of time with him as he is not the same person anymore and I don't want to remember him the way he is today as opposed to the man I grew up with. I know in my head that I should be thankful that I still have him here and I should cherish these moments, but my heart still breaks to see him like this. I want to remember him as the invincible man he was in my eyes before all this.He does have his good days and we thank God for them, but the radiation has been hard for him, his hair has all fallen out on the sides of his head, which really bothers him. We tell him he's still cute to us. And the temodar has caused sores in his mouth and left him with little appetite. I know I should be Thankful that he's still with us and really enjoy the good times, but one does lose sight of the positive things, and yes we have had some positive things through all this.OK, enough from me, sometimes it feels so good to vent, especially with someone who knows the emotional roller coaster of this disease. Thank You and God Bless. Sandy Sandy s. Sun, 08 Jan 2006 00:00:00 GMT Sandy, I don't live with my father and i struggle with not spending more time with him. It's just so hard on me emotionally, I can't. I call almost daily and I do visit often. My step mother hasn't left his side in a year and I worry about her. As far as the friends, we are fortunate to have friends that help out with whatever we need. However, sometimes I think my parents might need a little alone time. You are right, everyone does come to visit and then life goes on. We are struggling in this fight alone. However, I hope this doesn't seem too harsh, but the reality is we are fighting a loosing battle. It's so hard not to get too consumed in fighting and life will go on. I hope it doesn't sound like I am abandoning my dad because I'm not, and I would do anything to change his situation but, all I hope for is the best possible life he can lead without pain. I worry about my step mom because she is consumed with my dad and his illness. She hasn't left the house except to go to his doctors apts. Try to make sure you have an outlet. It's going to be hard for her to get on with life after my father especially since its been so long since she's been apart of one. Sorry for rambling... Erica Erica Sun, 08 Jan 2006 00:00:00 GMT Erica, No reason to apologize for rambling as I certainly rambled on to you. Thanks again for listening (reading) and also for responding. I know what you are saying about your stepmom, my mom spends every waking hour taking care of my dad. She is totally consumed with getting him better but yet the reality as you say is he may never get better. He has really good days and really bad days, just like we do. I hope as you say it gets better for us, as it's only been 2 months since he was diagnosed. On his 65th birthday no less. I think part of what is so hard for me is that my children, ages 15,12 and 6 are so very close to him and my youngest especially is grandpas boy, they don't understand what is really happening. My oldest is very understanding when my dad goes through the confusing stages, very patient with him and good to overlook the repeating of questions and explain things yet again. I do also worry for my mom as my dad is and has been her life for 45 years, she doesn't even drive a car. I have no idea what will become of her, I only live a few miles from them and I will help her in anyway possible but it's not the same. Talk about rambling, I did it again! Good luck and God Bless you and your family. I will put you in my prayers. Thanks Sandy Sandy s. Sun, 08 Jan 2006 00:00:00 GMT I just joined this list minutes ago, I have never joined a message board in my 40 years. My dad was diagnosed with multiforme GBM this month. He is 70 and did extremely well with the surgery, however we are now trying to determine if they got it all or not (some conflicting stories). He begins his radiation and temador in a week. I'm on this emotional rollercoaster being one of 3 daughters and my dad being the center of my universe..your posts have really helped me in just a matter of moments. It's hard to stay strong some days...but now I don't feel so alone or hopeless. thanks Spartan Mon, 27 Feb 2006 00:00:00 GMT I also had never joined a message board in my 40 years, and found this site helpful .It's nice to know there is someone else out there who knows what we are going through with this awful disease.I'm glad to hear your dad did so well with the surgery, and good luck to him with the radiation and temador. My dad finished his radiation 2 weeks ago, and will be restarting his temador within the next 2 weeks, his white blood count dropped too low the middle of Jan., so he ended up stopping the temador. Hopefully everything will go better this time around. There are alot of good times and alot of bad times, we try and cherish the good and work through the bad, but it's not easy. It really has helped me to talk about it and share my feelings and listen to other peoples thoughts, ideas and experiences. Stay strong, as hard as it is, and you can contact me anytime. Good Luck and God Bless you and your dad and family. Sandy Sandy s. Mon, 27 Feb 2006 00:00:00 GMT