CancerCompass message board discussion started by Geride on 11/21/2006 http://www.cancercompass.com/message-board/message/all,7915,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I have never come to this part of the site, I always go to the brain cancer part. But I am very interested to hear if anyone has had any success with glibomastome metform IV. My wonderful husband has been battling this for 7 mos now. He did the radiation and some chemo, temodar nearly killed him. We are on the cellect program right now but if anyone has any success with this horrible disease and another avenue I would love to hear from you. Thank you Nicks wife. Geride Tue, 21 Nov 2006 00:00:00 GMT Geri, my wife is an 18 month GBM survivor, works full-time and runs triathlons. There are a growing number of long-term GBM survivors out there and with some of the recent advancements in targeted therapies I am confident we will see this number continue to grow. Good luck! Gagbm Wed, 22 Nov 2006 00:00:00 GMT I am very happy for you and your wife. What kind of treatment did she do exactly. The docs are trying to get my husband to do steritactic Radiation therapy. Have you heard of this? Geride Wed, 22 Nov 2006 00:00:00 GMT Geri, my wife has done resection, re-resection, IL-13 clinical trial for newly diagnosed patients, radiation, Temodar, CCNU, CPT-11/Avastin, Temodar/Gleevac and is now on Tamoxifen. We had a comprehensive genetic analysis performed on her tumor which helped to guide us to this treatment regimen as we believed it to offer the best shot at long-term survival. I have indeed heard of stereotactic radiosurgery. It is a highly precise form of treatment using multiple beams of radiation targeted at a focal point inside the brain. The intersection of those beams produces a high dose of radiation which is lethal to cancerous tissue (and healthy tissue as well). I would strongly recommend you get a second or even third opinion from one of the major brain tumor centers such as Duke, MD Anderson, or UCSF. Good luck! Gagbm Fri, 24 Nov 2006 00:00:00 GMT Thanks for the heads up on the sterotactic, he has thankfully decided to wait for now. How did you go about getting a genetic evaluation of her tumor and what hospitals and doctors are you with. My husband did not react well to temodar, he almost died from it so he has been reluctant to go back on chemo, we are doing alternative actions right now but are always open for suggestions on how to prolong his life. This is a terrible form of cancer and has taken so many lives. I hope our respective loved ones will be among the long term survivors and God Willing even become cancer free. Nicks wife. Geride Fri, 24 Nov 2006 00:00:00 GMT In the east they say that from pain and suffering is birthed Love and compassion. What ever the outcome is for each person on this list we all will walk away with a deeper appreciation of the power of love. And we will have a deep understanding of the sacredness of life. And we all will know at a very deep place how blessed we are. I am not in anyway trying to hide the truth about this ailment. It is simply un bearable to face. But being truthful and open with others is healing for us all. This very action is positive. Your writing back to me is giving me strength. That is positive. Supporting each other is positive. This event that marks the end of life is no fun it is painful and it at times feels so unjust. I read ounce a phrase from a great spiritual teacher that went like this. Birth and Death are part of life. God has no reason behind it. God take the young and the old. The sick and even the doctor. What this has brought me to understand is that we are all going to go someday. The time is never told to use. So possibly the message of the end of life is to learn to live the life that we have 100%. To share more with others and reach out to the needy. Who knows ?? Depression is a circle of thought that says what about me what about me. When My wife was diagnosed and I started looking all this stuff up. I fell and still do fall into rutts of thinking what will it be without her if she goes in a year or two. This brings me beep suffering. But when I shift my thoughts to what about her and how can I serve her better my depression shifts from what about me to what about her. Anyway I want to support everyone in the thoughts that we all have some cause suffering and others may bring freedom. The process is positive. Whisper Fri, 24 Nov 2006 00:00:00 GMT In the east they say that from pain and suffering is birthed Love and compassion. What ever the outcome is for each person on this list we all will walk away with a deeper appreciation of the power of love. And we will have a deep understanding of the sacredness of life. And we all will know at a very deep place how blessed we are. I am not in anyway trying to hide the truth about this ailment. It is simply un bearable to face. But being truthful and open with others is healing for us all. This very action is positive. Your writing back to me is giving me strength. That is positive. Supporting each other is positive. This event that marks the end of life is no fun it is painful and it at times feels so unjust. I read ounce a phrase from a great spiritual teacher that went like this. Birth and Death are part of life. God has no reason behind it. God take the young and the old. The sick and even the doctor. What this has brought me to understand is that we are all going to go someday. The time is never told to use. So possibly the message of the end of life is to learn to live the life that we have 100%. To share more with others and reach out to the needy. Who knows ?? Depression is a circle of thought that says what about me what about me. When My wife was diagnosed and I started looking all this stuff up. I fell and still do fall into rutts of thinking what will it be without her if she goes in a year or two. This brings me beep suffering. But when I shift my thoughts to what about her and how can I serve her better my depression shifts from what about me to what about her. Anyway I want to support everyone in the thoughts that we all have some cause suffering and others may bring freedom. The process is positive. Whisper Fri, 24 Nov 2006 00:00:00 GMT You can get a genetic analysis at UCLA. Dr Cloussey, a neuro oncologist is someone to contact. There are also some clinical trials. Sadly, my husband has been unable to get into clinical trials thus far, as his tumor was small and there were no cells left over for genetic analysis. He can't even go off label for Avastin - yet. Sort of good news/bad news. Don't know where you live, but you can give it a try. This is a horrible disease, and it is hard to see my husband so fatigued and his speech impacted by what has happened since his diagnosis and surgery in October. He is halfway through a daily radiation regimen and Temedor. Tolerates the Temedor well. The last 10 days are a radiostatic high dose "boost". Good luck and prayers for you and your family. Take care of yourself. Gaylec Sat, 25 Nov 2006 00:00:00 GMT Geri,Ben Williams is a long-term GBM survivor and he has written a book about surviving terminal cancer. We certainly worked part of his philosophy of systemic, rotational chemo attacks into our plan. We also developed a good working relationship with a number of pathologists who are performing research into the genetic causes of cancer development. We offered samples of my wife's tumor in exchange for access to the genetic results. While there are only a few drugs available today that are known to target specific genetic anomalies, there will be more available in the future. We are standing on the cusp of treating a patient's individual cancer rather than treating them as a standard GBM patient. Good luck! Gagbm Sat, 25 Nov 2006 00:00:00 GMT We are also fighting the horrific gbm disease. My husband , 51, dx 10/4, resected 10/11 with gliadel wafer implant. Is currently being radiated w/ low dose of temodar. He is handling both well, no nausea little fatigue but we are only 1 week into treatment. It is frightening to read these posts. The effects of this tumor and surgery have left him a different man.I miss our old relationship. Do you have a good support system? It is essential for your well being. Thanksgiving was difficult and I am dreading the holidays...It is good to hear that one person is doing well with gbm she is indeed a miracle. Candace55 Sat, 25 Nov 2006 00:00:00 GMT Hi Geride I'm new to this site. My dad had a gbm. I did a lot of research on alternative or complimentary medicines. First and foremost is a woman by the name of Dr. Johanna Budwig. Her work with flaxseed oil is incredible. Get a Juicer and juice carrots. Lots of them. Flor essence tea is terrific. Raw Brazil nuts. Around 12 a day. The flaxseed oil cottage cheese combination helps dissolve the tumor, the betacarotene in the carrots converts to vitamin A in the liver and it also contains live enzymes. The tea will help detoxify the liver and clean out the blood. Finally, the brazil nuts contain about 100mg of selenium which will boost the glutathion levels to help protect the good cells. Let me know what you think. Take care Celine 7 Celine7 Wed, 29 Nov 2006 00:00:00 GMT  On 11/21/2006 Geride wrote:I have never come to this part of the site, I always go to the brain cancer part. But I am very interested to hear if anyone has had any success with glibomastome metform IV. My wonderful husband has been battling this for 7 mos now. He did the radiation and some chemo, temodar nearly killed him. We are on the cellect program right now but if anyone has any success with this horrible disease and another avenue I would love to hear from you. Thank you Nicks wife.It's 5 months later, and I've just come across your email message you posted @ Cancer Compass.  I hope my story can be of help to you and others who may read this:Last September my father-in-law was diagnosed with GBM IV in the right occipital lobe of his brain.  Surgery to remove whole right occipital lobe (which has left him without vision in the left side of each eye/his peripheral is bad on his left side); then radiation along with chemo pills (Temodar); steroids, too; January MRI did not look good; 3 spots not far from surgery site; surgery not an option and doctor did not want to continue Temodar/radiation; then Avastin - Avastin is usually used for colorectal cancer and lung cancer  but has also been used on patients with brain cancer with some promising results.  (www.avastin.com - I'm sure your doctor knows of this)  Now, some insurance companies do not pay for Avastin when used for brain cancer.  My father-in-law has just completed treatment 5 (treatments are given every two weeks); very few side effects for him; he also has had another MRI since January - the 3 spots have reduced in size!  Doctors want to continue the Avastin for as long as they can with follow up MRI's every 8 weeks.  Besides the chemo, he has made a list of good foods - fruits and veggies and has added lots of walking to his daily schedule.  In February he did start drinking fruit juice (now, I'm not drinking it and I don't sell it!) - Xango; this is some fruit juice that a pyramid marketing company sells; it's made from mangosteen fruit from I don't know where.  Anyway, this juice was his hope - his hope.  I don't know if it did or did not help with the shrinking of the tumors but I don't really care at this point.  All I know is his doctor's gave him Avastin and he improved his diet and exercise and we are very blessed to have the results we have today.  With lots of prayers and positive thinking and tough attitude, he's putting up a great fight to beat cancer!  And I pray that every cancer patient can do as well as he has done.  I would love to think, too, that a fruit juice could cure our illnesses....time, money and research will have to prove that one to me.  Peace to all Ra1963 Wed, 04 Apr 2007 00:00:00 GMT