survivor of inoperable GBM NEEDED!!!!!!

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survivor of inoperable GBM NEEDED!!!!!!

by stefaniem on Fri Jul 25, 2008 12:00 AM

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My husband has inoperable glioblastoma multiforme I am looking for hope and a survivor! I have found people who have had operations but none that haven't. I have asked for a operation to improve his chances but still told no. I know there is always a chance he could be the first if none are found, but to learn from one would ease my mind and help me so much. They tell me not to change his diet not to worry about what he eats or exercise just let him be.  I am not here to make him comfortable I am here to make sure he survives! He is only 43. We have six children ages 9 - 21. We adopted two with disabilities. Our autistic son is now talking and our daughter who has CP you can't even tell. She keeps up with her five brothers just fine! Now I need to change the path of my husband. PLEASE if anyone could help me find someone to talk to or even a posting or advertisement of someone who has survived without an operation. Please let me know ASAP. He started treatments today.

RE: survivor of inoperable GBM NEEDED!!!!!!

by MountainClimber on Fri Jul 25, 2008 12:00 AM

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I have a friend whose recurrent GBM was inoperable seven years ago and he is still alive. Surgery is efficient, however could remove all the tumor cells. So that, the key of the survival is whether the chemo theropy is effective to your husbanc.

God bless

RE: survivor of inoperable GBM NEEDED!!!!!!

by stefaniem on Fri Jul 25, 2008 12:00 AM

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Thank you! So your saying he had no operation and seven years later hes fine? Do you know if he went on a special diet? Did he do anything different than normal? Did he eat any different? Did he take any certain vitamins? Please let me know.  We will try anything and everything!

RE: survivor of inoperable GBM NEEDED!!!!!!

by MountainClimber on Fri Jul 25, 2008 12:00 AM

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He did and ate many things different. I talked to his family after my wife got the GBM.  It is Temodar plays the role in his survival. He is lucky bc Temodar works on him.

RE: survivor of inoperable GBM NEEDED!!!!!!

by stefaniem on Sat Jul 26, 2008 12:00 AM

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Oh thank you so much! I will show your email to my boys! You don't know how much this means to me. I knew there had to be someone. How is your wife? When did she find out?

RE: survivor of inoperable GBM NEEDED!!!!!!

by jcr65566 on Sat Jul 26, 2008 12:00 AM

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hi sorry for what you and your husband are going though as a cancer patient on this site we have all got cancer some were. There are alterative treatments. It had been shown since the 1960 just having injections of 1000mg of vitamin C and vitamin B will work against  GBM the problem is as cancer cells die they leave a lot of debris if you want to find out more you can go to  http://cancertutor.com/Other/Brain_Cancer.html the main thing is to try to stay away from any thing that has Simple sugars  in it a bit hard these days simple Sugars are sugar we put into a cup of tea or a cup of coffee also cakes biscuits etc  cancer loves sugar Drinking green tea helps to as it repairs DNA damage by cancer Cabbage helps with cancer and also  broccoli there is a whole lot more I can tell you but if you go on the net and do Google  search for cancer diet you will find more hope this helps Ray     

RE: simple sugars

by Aunt_Bee on Sat Jul 26, 2008 12:00 AM

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Ray, I have just signed up on this website... I have been hoping I could find something somewhere with some answers instead of questions! My husband 66 was diagnosed January 27 2008 with glioblastoma multiforme. He had surgery Feb. 1st, came home Feb. 5th. He was great immediately after the surgery... he had cataract surgery the week following, then 8 cyberknife treatments with half dose of temodar... then hernia surgery... then another 3 treatments of cyberknife with half dose of temodar... full dose of temodar April, May, June and now July.  we were really thrilled that he has come through so well, but he continues to have difficulty seeing (GBM was in his right occipital lobe with two small inoperable pieces in left occipital lobe). Today for the second time, he had an experience of his vision slowly receding... it is so scary. We have started on a regimen of deep breathing, meditation, etc., anything to calm him down... doctors think it is anxiety that causes this. All that said, I was struck by what you said about simple sugars. I am a sugar-holic myself, and I didn't realize that the sugars need to be eliminated!  Oh my! I will definitely change my ways.  He is having difficulty walking, but the most problem is that he can't see well enough. He says if I could see better, I could walk better.   Sorry to ramble.  Barbara

RE: survivor of inoperable GBM NEEDED!!!!!!

by Shemay on Sat Jul 26, 2008 12:00 AM

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On 7/25/2008 stefaniem wrote:

My husband has inoperable glioblastoma multiforme I am looking for hope and a survivor! I have found people who have had operations but none that haven't. I have asked for a operation to improve his chances but still told no. I know there is always a chance he could be the first if none are found, but to learn from one would ease my mind and help me so much. They tell me not to change his diet not to worry about what he eats or exercise just let him be.  I am not here to make him comfortable I am here to make sure he survives! He is only 43. We have six children ages 9 - 21. We adopted two with disabilities. Our autistic son is now talking and our daughter who has CP you can't even tell. She keeps up with her five brothers just fine! Now I need to change the path of my husband. PLEASE if anyone could help me find someone to talk to or even a posting or advertisement of someone who has survived without an operation. Please let me know ASAP. He started treatments today.

You asked to hear about someone who did not have surgery but I felt compelled to tell you about my friend anyway. He did have surgery but the tumor was so deeply imbedded he was considered terminal. Here is an account of his experience. My son's accountant/friend has survived cancer twice in his life using alternative protocols (diet, supplements etc. )The first time was when he was thirteen and had a brain tumor. After surgery his doctors told his parents that the cancer was so deeply imbedded in the brain and there was no hope to save their boy. They were of Mennonite background and believed strongly in natural healing and so they took Dale to a naturopath, followed his directions as to diet, supplements etc. and he lived cancer free for another 25 years before cancer struck again. This time it developed in his stomach. The oncologist he was referred to told him he would be dead within three months if he did not have chemotherapy but he again turned to natural healing and it is now more than six years later and he remains cancer free. He has devoted his life to counseling the newly diagnosed and grows organically and harvests the four herbs needed to make Essiac tea. He then brews the tea, bottles it and gives it away free of charge to anyone within driving distance of picking it up. He also recommends a Regimen for Detoxification and Regeneration which is a protocol of diet, supplements, treatments and life style changes. If you'd like a copy of this let me know and I'll gladly send it to you. Also here is a link with information re diet and autism which might be helpful. Autism http://www.bodyecology.com/autism.php

RE: survivor of inoperable GBM NEEDED!!!!!!

by lindae on Sat Jul 26, 2008 12:00 AM

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You may want to consider getting a second opinion if you haven't already done so.  What some surgeons consider inoperable, others think can be surgically removed.  Senator Ted Kennedy is a good, recent example of this.  Massachusetts General Hospital apparently felt his tumor was inoperable, but Duke University disagreed and performed the surgery.  I know of other patients who have had similar experiences.  I don't know where you live, but if you can get your husband to a major brain tumor center for a second opinion, it would be worth it.  Aside from Duke, MD Anderson in Houston and UCLA come to mind.  Best of luck to you.

RE: survivor of inoperable GBM NEEDED!!!!!!

by tranquillity on Sat Jul 26, 2008 12:00 AM

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There is  nutritionalist by the name of Jeanne Wallace. www.nutrional-solutions.net . She is located in North Logan Utah 435-563-0053.

One of the fellows in my brain tumor support group has been using Jeanne and swears by her. He has never had surgery and was given only a week to live after finding out he had a brain tumor...and that's been seven years ago.  Take a look at her site for details, basically you send all your files to her, she reviews them and then designs a vitamin  routine that she feels will work.  It's not cheap and I don't think it is covered by insuance.

My GBM was taken out and I was able to have radiation and Temodar and just had my 3 year anniversay post surgery, with all MRI's being clear & stable.

I hope this information helps.

 

Tranquillity

 

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