CancerCompass message board discussion started by Bills1gal on 5/13/2006 http://www.cancercompass.com/message-board/message/all,5328,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband (56) was just diagnosed with a brain tumor on May 4, 2006. He was admitted to the hospital on May 5, 2006 to begin large doses of steroids to help shrink the tumor which was the size of his fist. He had surgery on May 10, 2006 and about 80% of the tumor was removed and diagnosed as a Glioblastoma VI on the occipital (spelling) part of the brain right side. He is still in the hospital and he has done wonderfully with the surgery. He had a drainage tube which was removed yesterday (5/12/06) and he has had massive headaches since. He was supposed to come home today, but had a very restless night with very bad headaches. We still have not talked with the oncologist to receive a treatment plan. They said radiation, chemotherapy. How do you make these choices?? do we go with the oncologist for here in our town in NC or take the advice of a friend and go see Dr. Henry Friedman at Duke Medical Center? Does anyone know anything about him??? Bills1gal Sat, 13 May 2006 00:00:00 GMT Hi Debi. Got a message that you wanted some info on alternatives. Please contact me at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----. The moderators are out all weekend, so perhaps they will forgive me for posting my email. We can talk on the phone and I'll tell you everything I have learned and seen. And connect you with people who have successfully beaten this one. GleoBlastoma is a scary name. You must be beside yourself. I think once we talk you will feel a lot better. Though according to my ex husband, (now cured), no matter how confident you are, or how many times you have seen this work so well for other people, once it happens to you personally, it is like a bear chasing you down. Both people who I watched do this alternative, were under a doctor's care the whole time. So you don't have to think of it as an either/or proposition. Calgal Sat, 13 May 2006 00:00:00 GMT Bills Gal, a GBM diagnosis is a very difficult thing but is not necessarily the death sentence some doctors make it out to be. My wife just passed her 1 year mark since diagnosis and her MRI scans remain clear. You are very fortunate to live near one of the finest brain tumor centers in the world at Duke. Henry Friedman and his staff are absolutely exceptional and you cannot get better care anywhere else. My wife has been treated at Duke and she has done very well. We made the decision to travel from Atlanta to Durham every 6 weeks rather than see local doctors because Duke's expertise is unmatched. If you page Henry Friedman he will call back within hours and together you will develop a plan for your husband's treatment. Now that you are a member of the 'GBM Club', you will meet many people claiming to have found 'the cure for cancer' that 'nobody else knows about' and the pharmaceutical companies 'don't want you to know about.' Much of this is complete bunk. There are GBM patients who benefit from having a dietician assist with meal and supplement planning. I would be highly suspicious of people claiming 'cures' as there are many frauds out there. One way to identify a fraud - somebody who can't spell the disease they are claiming to cure (i.e., glioblastoma) is likely someone you shouldn't trust. Page Henry Friedman - the motto of the Brain Tumor Center at Duke is: "At Duke there is HOPE". They live by that motto, my wife is proof. Gagbm Sun, 14 May 2006 00:00:00 GMT My drs. gave me 17 months when I was diagnosed. Well, my 17 months was up over a year ago!!!!! If you are able to see Dr. Freidman I would recommend it. Definatly make sure you meet with a neuro-oncologist at a brain tumor center. Local medical oncologists are just not equipt to deal with brain tumors, especially GBMS. Brainy_chick Sun, 14 May 2006 00:00:00 GMT gagbm, where can I find Dr. Friedmans number to page him? We are ready to go see him asap. We have had his name sent to us thru at leat 5 people all unrelated and this seems to be calling us. We are 1 hr 45 min from Duke. Our son actually graduated from Duke last May 2005 and he is just insitant that we go. Bills1gal Mon, 15 May 2006 00:00:00 GMT I was recently diagnosed with Stage IV Glioblastoma Multiforme. I am going to the Duke Brain Tumor Center. I had a tumor the size of a tennis ball removed on April 6, 2006. 95% was removed and I have begun chemotherapy and radiation on May 11, 2006. They know what they are doing at Duke. Get your doctor to refer you to the Brain Tumor Center at Duke. If one procedure does not work, they have another one to try. They have an incredible group of people devoted to brain cancer. I wish you the best of luck. All is good. WE WILL ALL GET THROUGH THIS. Flippy66 Mon, 15 May 2006 00:00:00 GMT Can be paged at --- Message edited by CancerCompass staff: for personal protection, phone number removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----. Be prepared for calls late at night or early in the morning. He is very good about returning calls - everyone at Duke is. Gagbm Tue, 16 May 2006 00:00:00 GMT We found out just under a week ago now (on the fourth of july to be exact) my mom and I found out that my father who had gone into the hospital just over a week before for hip surgery has been diagnosed with glioblastoma.  My mother was on the phone with a cousin of mine in ohio (we are in sc) right before I walked in.  I started doing a search for help, info and alternate answers on the diagnosis.  I see a name from duke where I've already had a couple people tell me he should go for answers.  I see the doctors name and asked my mom the doctor my cousin had suggested and it was the very doctor I was reading about here.  I must say when the Good Lord answers prayers He does them fairly quickly once He does.  I would appreciate any answers anyone is willing to give on any part of this.  My mother (since it's her husband) will probably need more support than anything but anything anyone is willing to tell us constructive we will welcome it.  I just signed up on this board not 20 minutes ago so I don't know how messages go through if there's email or if we can give it or what but I will keep checking here if you need me I will get back in any way I can as soon as possible. Thanks in advance. cptcarrot Tue, 10 Jul 2007 00:00:00 GMT