CancerCompass message board discussion started by Marycarole on 12/20/2005 http://www.cancercompass.com/message-board/message/all,3782,0.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/ Hi Everyone, Does anyone have experience with adult pontine glioma? My 33 year old husband is going through diagnostics as we speak, but 2 out of 4 cancer centers have said they think it is a grade III pontine glioma. I'm doing a lot research to learn about this type of cancer and I am overwhelmed by the prognosis. Can anyone tell me if they know of any long-term survivors of adult DPG? Thank you, Mary Marycarole Tue, 20 Dec 2005 00:00:00 GMT I have never heard of such a tumor, however there are over 120 types of brain tumors and I don't know them all I'm sure. Anyway, I am in my mid 20's and was diagnosed with a grade IV Glioma called a Glioblastoma mnultiform in 2003. Is the center where you husband is being treated just a cancer center or is it a Brain Tumor Center? I would dtrongly suggest you take him to a Brain Tumor Center. A list of these can be found on the site - www.virtualtrials.com Brainy_chick Tue, 20 Dec 2005 00:00:00 GMT Brain stem gliomas do not have a good prognosis. Radiation may help some but is not a cure and surgery, which is the only cure for most brain cancer, is not usually an option. Generally survival is 1-2 years. I would check with the American Brain tumor association or the NCI for clinical trials. Also, I would pray. May God Bless your family. Oncrx Thu, 22 Dec 2005 00:00:00 GMT ruta 6 is a natural product which has had some anectodal success in brain tumors. You should lookm into that along with other clinical trials. Oncrx Thu, 22 Dec 2005 00:00:00 GMT Hi, my husband was dx'd in 2003 with a Brain stem glioma located in the tectum. He has gone through standard tx with some success. It has kept him alive for 2 1\2 years however quality of life has not been optimal. We have now reached the point of deciding to cont with more toxic chemotherapy or chosing alternative tx. We just returned from The Burzynski Clinic in Houston Tx. He has a clinical trial underway for Brain stem gliomas. They are hoping the FDA will approve this tx within the next year. They are waiting for them to start their review. Has your husband undergone any tx as of yet, and if so what? I hope and pray for the best. Sue Austinsdad Fri, 30 Dec 2005 00:00:00 GMT Hi Sue, Thanks for your reply. We are at UCLA now and Steve will begin chemo and radiation on 1/10. His tumor is in the pons region and is largely a grade II with a few areas of grade III. He's also doing an intensive diet for cancer (see book "Beating Cancer with Nutrition") and is on a plethora of supplements. (Also see Dr. Ben William's book called "Surviving Terminal Cancer" for lots of great information). I'm looking into Ruta 6 as well. I have some questions about Dr. Burzynski's trial. What phase is it (I, II or III) and has it begun yet? I assume it's a phase III since they are awaiting FDA approval. What agents are being tested? Thank's Sue and I'll pray for you also. What is your husband's name by the way? Mary Marycarole Fri, 30 Dec 2005 00:00:00 GMT Hi Mary, my name is Trent and I too have a pontine glioma. I would very much like to talk to you or your husband either by email or phone. Maybe we could share some insight with each other as this is a rare cancer. 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 ---- Trent Mon, 19 Jun 2006 00:00:00 GMT Hi Trent, I've e-mailed you twice; are you getting the messages? I would love to talk with you and try to help. Mary Marycarole Tue, 20 Jun 2006 00:00:00 GMT Hi Sue, my name is Trent and I have a pontine glioma also. I would very much like to speak with you and hopefully get some insight on the disease and treatment. Please contact me a --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Thanks, and best wishes. Trent Trent Thu, 22 Jun 2006 00:00:00 GMT I did get them, thank you. I have tried to call also, but no answer. I will keep trying, Thanks again. Trent Trent Thu, 22 Jun 2006 00:00:00 GMT Trent, I apoligize for not responding to your messages, unfortunately my husband had taken a turn for the worst and passed away at the beginning of the month so I haven't kept up with the message boards. I would be happy to talk with you about my husbands treatment and other subjects..... I believe you are not able to leave personal info in the site but there are other sites available that you can. I will look back in my emails and try to get them to you. Sue Austinsdad Sun, 25 Jun 2006 00:00:00 GMT Hello Sue, I believe you and I spoke last January. My name is Mary and my husband and I were out at UCLA for his treatment when you and I spoke. We talked about your husband going to Burzynski Clinic. I am so sorry to hear that your dear husband lost his battle. How are you holding up? Sending prayers and hugs your way, Mary Marycarole Sun, 25 Jun 2006 00:00:00 GMT Hi Mary, We're hanging in there. We're still in Cincinnati with his family. Austin and I go home tomorrow so then we'll start the healing process. It will be a very long hard road, especially with a 3 yr old but we'll make it. Thank you for asking. Sue Austinsdad Mon, 26 Jun 2006 00:00:00 GMT I am very sorry for your loss. I wish there was something to say or do but I will certainly keep you and your family in a special prayer tonight. Thank you for responding to my email. Trent Trent Wed, 28 Jun 2006 00:00:00 GMT You've been in my thoughts and prayers. I can't even begin to imagine what you are going through. These brain tumors are for the pits, I tell you. I live with tremendous fear of losing my husband so I can relate on that level at least. I will pray that you are surrounded by lots of loving and caring people who want to help you get through the grief process. How you must be hurting not only for your loss but for your son's loss of his father. I'm sending lots of love and hugs. Mary Marycarole Fri, 30 Jun 2006 00:00:00 GMT hi, i am a 24 year old who has been diagnosed with the above. please im so scared of suffering, i can't sstop crying. how bad does it get, will i suffer, be in pain? Lisa1 Sat, 21 Oct 2006 00:00:00 GMT