CancerCompass message board discussion started by Wireman on 1/10/2006 http://www.cancercompass.com/message-board/message/all,3980,0.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/ Good Morning, I was diagnosed with GBM on 11/7/05,operated on and am now almost done with radiation (9 to go). My question is second opinions going into phase II. Everyone seems to have an opinion about what is best. Sloan Kettering, Duke, Johns Hopkins, Mayo Clinic and of course stay where you are (Hospital of the University of Pennsylvania)they are the gold standard. Does anyone have any idea how to wade through all this information and make an informed decision without delaying treatment? Thanks, Wireman Wireman Tue, 10 Jan 2006 00:00:00 GMT Wireman...glad to have you aboard...not the best way to meet but its our challenge for life. You're truly right about one thing, everybody seems to have an opinion about your life and they will be glad to share it with you. Sad to say but you're the one whose gonna have to weed out everything and pick what fits you. Look at all the posts you get and find out which place does what and who gave the best service and care. I have been working with this thing since 03/05 and i have found that it may take 3 or 4 different places for different things, I haven't found "one size fits all." Good Luck, God Bless, and ask as many questions as you need too. You can bet that someone on this board has "been there done that". Garland Tue, 10 Jan 2006 00:00:00 GMT Wireman, I would also add MD Anderson and Cleveland Clinic to your list to investigate. My wife is a GBM patient, we live in Atlanta, and go to Duke to have her treatment 'choreographed'. We have a local Oncologist in Atlanta who has worked extensively with Duke in the past, making the process run very smooth for us. We are delighted with Duke and are convinced they are saving my wife's life (with a high quality of life as well - 8 months out and working full-time and being Mommy to our son...knock on wood). Listen, a GBM diagnosis is a very tough thing but is not necessarily a death sentence. You are probably sick of hearing the doctors say "everybody is different" (which is absolutely true). Since everyone is different, you want a team of doctors that will treat you and your tumor, not just throw the "best standard of care" at you (currently surgery, radiation/Temodar followed by 6-24 months of Temodar until disease progression). You want to go to a major academic center that specializes in treating Brain Tumors (just because they are a major cancer center doesn't mean they specialize in treating brain...)and has active research programs for treating brain, and who will take the time to analyze your tumor and treat YOU. These places tend to offer the most advanced clinical trials and are on the cutting edge of treatment. Also, many of these places (Duke included) will review your MRI's and pathology slides and if they feel they can help you they will let you know. You generally have 2 weeks from the end of radiation before starting the next round of treatment, so you need to get busy as it sometimes takes awhile to get an appointment. Go with your gut and choose the Center whose people you feel most comfortable and confident in. Are you taking Temodar while undergoing radiation? Good luck! Gagbm Tue, 10 Jan 2006 00:00:00 GMT Hi Wireman, Sorry to hear about your GBM. I know how difficult it is in the beginning to sort everything out. My suggestion is to just be sure you go with a major Brain Tumor Center because that is all they deal with and give the best care. My husband was dx in 1/05 with GBM and was given six months at best. We are now at the one year mark and he currently has no regrowth of tumor and is doing very well. He is 58 years old and even continues to work full time. My point is, try not to let the statistics get in your way, they can be so devastating. Just keep the faith, and focus on your treatment. I don't know where you live, but we live in California and are being treated at the UCLA Brain Tumor Center. In the beginning, because it was closer for us, he had his surgery at Loma Linda University followed by radiation. We felt comfortable with that because that is the standard treatement. Upon completing radiation, we then transferred to UCLA. You are right in not wanting to delay treatment. Our doctors really stressed that while it is okay to research different options, don't spend months doing so and therefore wasting precious time. Good luck with everything and please keep us posted. Fondly, Patty Marmie Tue, 10 Jan 2006 00:00:00 GMT Hi Wireman, I just want to suggest a book that could help you. It's called "Surviving Terminal Cancer" by Ben Williams, PhD. He's a 10 year survivor of GBM and he provides incredible amounts of extremely useful information. I can't recommend this book highly enough. You can even contact him via the virtualtrial.com site under Survivor Stories, GBM, Ben Williams. He will respond and offers consulations free of charge. I wish you the very best, Wireman. Stay strong and NEVER, NEVER stop believing a miracle will happen for you!!!!! It can, and it will!!!! Mary Marycarole Tue, 10 Jan 2006 00:00:00 GMT Hi garland, My name is Rita,I am Peter in Fl. Girlfriend.I just want to take the time to thank you for being out there,you have given him alot of hope,as I am sure lot's of others! I am trying to learn as much as I can about brain cancer.You have been alot of help...Thank you! God bless you. Rita Windsong04652 Tue, 10 Jan 2006 00:00:00 GMT Hi, Yes, I'm taking 140 mgs of Temodar every day and radiation 5 days a week. After next Friday, 1/20 everything stops for 3 weeks and then I go back on th Chemo 5 times a month at something like 560 mgs each time. Denis Wireman Tue, 10 Jan 2006 00:00:00 GMT