One patient with glioblastoma still alive nine years later
by tjobos85 on Sun Dec 05, 2010 03:36 AM
Stage 4 P.C. since 01/08/10. Lives in Seattle last 30 years. Brought him home to Boston for 6 months where he received chemo at Dana Farber. Tumors shrunk he went back to Seattle to live his life. Chemo no longer working and he is beginning to experience more pain, confusion, weight loss and severe hiccups. Has weeks to months. Will live out his days in Seattle. I have my mom and four brothers as well as extended family in Boston. Brothers and I have been periodically been out to Seattle. I was there a month ago and I now know it is catching up to him. Asked him to come home to Boston but he declined. Will examine death with dignity as mandated in the State of Washington. Really sucks being on a long distance death watch each and every day and trying to gauge what to do. Feel so hopeless at times. He is single and has his friends looking after him but I wish he was here. Yours prayers and thoughts are truly appreciated. What to look for near the end as far as symptons for I am planning to go back out soon. Early intervention hospice and visiting nurse in place.
by Roselvr on Sun Dec 05, 2010 03:18 PM
Hi Tom; I'm sorry about your brother. The best suggestion I have is to see if he will let you speak to his doctors; so that maybe you will have a time line. I wish he would consider going back to Dana farber; they're supposed to be good. I'm pretty sure University of Washington is supposed to be good. Maybe he needs another opinion?
Your post freaked me out some- I know someone with a similar last name in Mass but he's stage 4 kidney/stomach. Diagnosis was 1/10 as well.
Here is a cancer tips post I did-
You can get the cancer center rating there as well as a copy of 5 wishes.
by tjobos85 on Mon Dec 06, 2010 04:04 AM
Thanks, Danny was diagnosed with Stage 4 back in January at a facility outside of Seattle that was not a cancer center. I was not satisfied with his care in Seattle so I convinced him to return to Boston. Dr. Tom Abrams at Dana-Farber was fantastic. When Danny returned to Seattle he hooked up Seattle Cancer Alliance through UWash and Doctors on both coasts concurred with diagnosis, treatment and prognosis. Danny has been inspirational throughout and quite satisfied with care provided by both Boston/Seattle teams.
by bikerchick29er on Mon Dec 06, 2010 02:35 PM
Well as I am sure you have heard but everyone is different. My mom died Oct 1. She had Stage 3 Lung Cancer. She was responding fairly well to the chemo she was on but in Sept she started having strokes and looking back now that should have been our sign. It was about 4 weeks from the day of her first stroke to the day of her death. We have family from all over the country.. her brother and sister live out west and my brother (her son) is stationed in Alaska. We were able to get everyone home for the funeral but it would have been nice to have them all be with her while she was good. Her last really good day she did spend with me and my son and my dad and then the next day she had another stroke and that put her in the hospital where she stayed.
I can only tell you what my mom went thru during her last days and it wasn't the prettiest thing. She was heavily sedated and in a coma state from her last major stroke. We put her on comfort measures only and took everything else away. We moved her into a Hospice facility and she was there 2 days before she passed away. The last 2 days her feet turned purple she got a fever that we couldn't bring down, her breathing was rough.. basically her body was shutting down. It wasn't pretty but she wasn't in pain and she went fairly quickly.
My opinion if he isn't willing to move back to you if it is possible keep in frequent contact with your brothers doctors and friends. If you are unable to go to him during his duration that is the only thing I can suggest.. keep in contact with his doctors.
My best to you and your family.
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