CancerCompass message board discussion started by Flippy66 on 5/29/2006 http://www.cancercompass.com/message-board/message/all,5488,0.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/ Hi. Was diagnosed with GBM IV in early April. I had a huge tumor that was discovered because I had headaches. Before resection, I had numbness in left side. It got really better after rehab following surgery. Sense of smell and taste were also messed up before the resection. It seems to have gotten worse from radiation and chemo (temador). Have 30 more days of treatment before taking a break and seeing what the evaluation will be. MY BIG QUESTION IS...how do you know you're getting close to the end? With it being the brain, do you even know? What do we have to prepare ourselves for? I am doing fine, really fine. Did not lose facial capabilities nor speech. Very lucky. Have not had a seizure either, but on Dilantin for prevention. Sometimes depression is overwhelming and mood swings very unusual. Please keep in touch, and I will do the same. Can't wait to see the next MRI. Take care, Peace. Flippy66 Mon, 29 May 2006 00:00:00 GMT My husband had a very large tumor diagnosed August 2004. He did all of the standard treatment & did incredibly well. He had no new tumor growth for 12 months. After the 12 months however, he began to have headaches & a few mild siezures. We went back in for more steriotactic radiation & that seemed to work for about 4 months. Since then my husband has experienced a very slow decline. He has no short term memory,& is very unstable on his feet. some days he needs a wheelchair. His spirits are high, and he has complete understanding of his surroundings & what is going on. He does not have much pain, and does have hospice to check in on him once per day. I don't really know what "the end" will look like either since nobody will really say, but for now my husband still has a good sense of humor, a good appetite and we feel blessed beyond belief to have him with us each day. the beginning of all of this is so scary, but we found that taking it one day at a time & lots of prayer has kept us going. God bless, Loriann Tue, 30 May 2006 00:00:00 GMT i think sulfasalazine will give everyone a little comeback its bought my mum a bunch of time and she starts talkin a little more and liven for her family....you might have to convince the doc but it will bring your loved one back for a little more fun for one........ Norain Sat, 10 Jun 2006 00:00:00 GMT My husband was diagnosed 12/05, gbm iv left parietal lobe, resected, radiation and temador; three days after completion had a "brain bleed" which left his right side very weak; five weeks rehab, home April 12, MRIs clear, making progress on physical and speech therapy. May 20 had a very mild seizure, took him to ER because we wanted to be sure there were no aftereffects. They did CAT, no change, everything clear, getting ready to release him, I adjusted his pillow, his head on my arm, he had another little seizure, and he died. No warning, nothing. They couldn't get his heart started at all. It would seem that if the cancer itself doesn't get you, the side issues of this horrible business does. WE are devastated; there was simply no warning. We felt that we had 18 or more months before the tumor would reappear. My best wishes are with you all on this journey. Revandepitte Sun, 11 Jun 2006 00:00:00 GMT I am so sorry to read about your experience. I lost my mother to a GBM 4 and it too was very quick. My mother had no symptoms and then started to experience vision problems -- could not read. She was diagnosed and died all within 3 weeks. Her tumor was in the parietal lobe and was inoperable. She opted to take no treatment because by the time she had any symptoms, the tumor was quite large and she really never had any hope. When she was discharged, they told us 6 months. She lived another 10 days at home and died suddenly one night, even though the hospice nurse did not think her death was imminent. Our experience with hospice was not good. They were not responsive at all and only came once or twice. My mother was very lucid until the end, had some short term memory loss. Because of the parietal lobe location, she lost her spatial awareness and could not navigate. She spent her last 10 days at home in bed fully aware of what was happening to her. She was in constant pain (stomach ache, cold feet, etc.) and woke up one night and appeared to have a stoke. She never woke up and died 4 hours later. It was the most horrific thing I have ever had to live through. Doctors and hospice personnel did not prepare us for this, even though I asked many times. Maybe they really don't know or maybe they just don't want to tell you how bad it is. I was told she would die peacefully in her sleep due to increasing pressure on the brain. She did not. Her last words of horror were "Oh dear God" and that was it. Mhop53 Wed, 14 Jun 2006 00:00:00 GMT