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Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

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There are survivors of brain cancer. Go to www.ncrf.org and read the testimonials. Use antioxidants and coral calcium. Change the diet - go natural - no sugars, meat, milk, eggs. Eat healthy, take supplements and PRAY! Judy

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Sherrie_G

Thanks for writing and I am very interested in reading the info you suggested, however, I can't find a link to testimonals. Would really like to see what's going on on this website. Please send more info than just --- www.ncrf.org Sherrie

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Darla

I too have felt great. I had to have a 2nd surgery after 8 months, but the tumor was very small. They put radioative seeds in my brain and now I will start a new chemotherapy tomorrow. Would love to keep hearing how he is doing. Darla

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Charlotte

Sherrie, How is Ross doing? My dear friend was just diagnosed on 1/26/05. We are devastated. He has 4 small tumors -- 3 on one side of the brain, and one on the other. They are inoperable. We are scheduled to see the oncologist tomorrow.

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Joenlea

My husband Joe was diagnosed with stage 4 GBL on the left parietal lobe on 11/9/04. He is 46 years old and other that hyper-tension and workaholism, he was relatively healthy. He had banged his head 2 weeks prior to his diag. received stitches and a CT scan that supposedly showed a mild concussion. a few days after removing the stitches he had excruciating pain with vomiting. I noticed one pupil was larger than the other and rushed him to the hospital. They diagnosed stage 4 GBL after an emergency craniotomy to reduce swelling in his brain. they removed one tumor completely and resected almost all of the second. He had one out of three treatments of intra-arterial chemotherapy at one hospital. (where he had the surgery) Then decided to go to Sloan Kettering because everyone kept telling him It's the best Cancer treatment center! I on the other hand believe different people do well at different centers. I am treating him in conjuction with SK's Radiation and temodor, at home with several homeopathic remedies and herbs along with megavitamins and organic foods. He developed Bloodclots in both legs as well as Pulmonary embolisms in both lungs. He is doing well so far, considering. and his first MRI since the operation has shown the tumor is smaller. We pray it keeps going this way. We will pray for you as well.

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Joenlea

Dear Darla, did you have traditional radiation treatment prior to having the seeds? The doctor's had told us that my husband has met his lifetime quota of radiation for the brain after recieving 36 standard radiation treatments after his first surgery. I am wondering if seeds are still an option for him if needed down the road? Sent with prayers, Lea

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Cidorov

Research published by Dr. Sontheimer from the University of Alabama. This med already fda approved for Chrones and Rheumatoid arthritis showed tumor halt or reversal in imunosupressed human glioma induced rats after 48 hours. My wife was diagnosed and had 5cm by 5cm resection in june. Is now in fourth week of radiation and temodur. Started sulfasalazine three weeks ago. up to 3.5 grams a day and will increase to 4 grams as tollerated. Sulfasalazine bypasses the blood brain barrier and suppresses "system X" which produces death in normal healthy tissue and manufactures a substance that protects the gbm from normal cell death or harm from free radicals. Radiation produces a temporary state of high free radicals to induce chromosomal damage to interfere with replication. The rats in this study just got sulfasalazine. we are hoping the combined effect will be dynamic. Anyone wanting to know more can google sulfasalazine and glioblastoma. I have been coresponding with Dr. Sontheimer and they are looking at a dose of 4-6 grams a day over 3-4 dosings per day. We wont have any imaging until 2-4 weeks after the 6 week course of radiation and temodur. Oncologist says they can't get a good picture while radiation is ongoing. I will repost developements here.

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Annamarie

My mom was diagnosed last year (April 2005), had surgery in June 2005, they could not remove the whole tumor, and then received radio for 1 month, and is now on her 14th cycle of Temodar. She is fine, except for side effects related to steroids. Her life expectancy was 6 to 12 months after diagnosis, its been over a year and thanks God she is doing fine. Annemarie

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Almel

Hi I would love to hear the progress and results of success (hopefully!) of this. My father is looking at a similar treatment as "tradtional" chemo has largely failed to date. Thanks

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Cidorov

After RT/Temodar, during which time she took SSz she became nuetrpenic and had an infection. We stopped everything while in the hospital. She is much better now and has finished five days of high dose of Temodar. While in the Hospital she had an MRI and it showed that the tunor had reduced 40%. This is very good news. Unheard of. We were told the best we could hope for after RT/Temodar was no growth. We have waited to see how she tollerates the 5 of 28 day cycle of Temodar to restart the SSz and that will probably happen this next week. Doctor willing or not. We are very happy so far and have less than nothing to lose. This is a drug that is well tollerated in human beings. I think most Docs have a hard time believing that anything involving their highly superior understanding of this very complex and baffling disease could be so simple. Don't let their egos stop them or you from doing what is clearly right. Good luck. Report back please. Bob

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