Yesterday, I had a doctor's appointment with the same neurology group where Ted had his GBM removed and treated. The visit was for me, not Ted this time, but of course Ted's GBM always enters the conversations due to his longevity.
According to Dr. Modha's Physicians Assistant, GBM patients are living longer.She said it used to be that they would tell patients they had a year at the most, which is exactly what they told Ted, but now they are seeing people who are three, five and even seven years out. Ted's seven year anniversary is this Monday by the way and we intend to celebrate. She said that Ted is on the leading edge of this shift in prognosis. We didn't get a chance to ask her why because the visit was about me this time, but I will be going back in a couple of weeks to see Dr. Modha, so I will make sure to ask him why there has been a shift in longevity, and I will report it here. This is really great news.
According to Dr. Modha's Physicians Assistant, GBM patients are living longer.She said it used to be that they would tell patients they had a year at the most, which is exactly what they told Ted, but now they are seeing people who are three, five and even seven years out. Ted's seven year anniversary is this Monday by the way and we intend to celebrate. She said that Ted is on the leading edge of this shift in prognosis. We didn't get a chance to ask her why because the visit was about me this time, but I will be going back in a couple of weeks to see Dr. Modha, so I will make sure to ask him why there has been a shift in longevity, and I will report it here. This is really great news.
My husband was diagnosed with GBM in March of this year. He has just finished his 6 weeks of radiation and his first course of Temodar. He will start Temodar again in about 2 weeks. No one has ever really come right out and said what his longevity is other than his brain surgeon who said something right after his surgery to me about 18 months or so. Any information you can share after your next appointment would be WONDERFUL!!! The longer I can have him in my life the better. After 10 years of trying and several IVF's we are expecting our first child in 9 weeks. I want my little girl to get as much time with her daddy as possible.
ReplyDeleteThis website has been such an inspiration to me. Right after his diagnosis I, of course, did the research and it was all so awful This was the first website that gave me a little bit of hope! Thank you for that! You and your story are truly and inspiration!!!
Thank you so much for this site!!!! My dad has just been diagnosed on May 31, 2013. I have done no research....on purpose. I sat with the doctors and heard what they had to say but they have never given a timeline. They told us how ong that the first treatment usually lasts but that each person reacts differently. They also have the attitude that they when it does come back they treat again until they can't treat anymore and then there are clinical trials. His surgeon says the more years he is here with us more and more treatment options come available. I am grateful for there fighting attitude. It gives my dad the will to fight:)
ReplyDeleteI have not researched because I do not want to read horror stories. I googled GBM success stories and this page showed up. I am greatful to have found this. Thank you for taking the time to share your story.