On Mar 31, 2011 2:31 PM jefuchs wrote:
I've been angry at the medical community for publishing dire numbers for oligodendroglioma survival. All of the medical websites I've seen tell me that the average survival for grade II is 10 years, and the average for grade III is 3.5 years.
It has become apparent that they've scared the bejeezes out of us beyond proportion. For nearly a year and a half I've been seeking out other oligo patients (I'm not one myself, but my wife is), and every one I've found has beat the "average" by many years. By contrast, regular readers here have seen many GBM stories that seem to mirror the official life expectancy pretty closely.
So, not finding even a single case that comes close to the published expectations. I want to know if you guys have seen anything different than I have.
Let me know your (or your loved one's) year of diagnosis, and how they're doing. If you know someone who has actually died of this, please share the story.
My wife was diagnosed in November 2009, and is still on Temodar, and doing very well.
October 28,2014 it all began. I started to stutter and had little control of my left side. it would come and go. My husband initally thought i was joking around. But realized that I wasnt and brought me to urgent care. They sent me to the hospital immediately. They thought I was having a stroke. But once i got to the ER, the fun began...Not. the xrays, cat scans, mri's were just so much fun(sarcasm). Next thing i know Im admitted. On Halloween they did a biopsy. (Who needs a scary costume when you have your own scar on your head) My tumor was the size of a kiwi in the shape of a tulip. Biopsy came back as cancer. But.. when i went out toBrigham Womens hospital in Boston, Dr. Golby (who is fantastic), scheduled me for the removal of the tumor. She was only able to get 90% of it. She explained that you never get rid of the Oliogodendroglioma Its like a weed. after a 12 hour surgery and four days later I was sent home to New York. I was told it was a Oliogodendroglioma 2. benign. I had the ever so important deletions. I was doing so well until December 27 2017. I had six mini seizures. scary as heck. so back to the er i went. They didnt do much but take a chest xray, yes chest xray to rule out pneumonia. No pneumonia. They said it was brought on by a respitory infection and stress. They kept me for observation. Sent me home.(let me just say I will go to a different hospital next time) I went to see my neurologist who had scheduled an mri for me six weeks later. So three months to the day I finally got the MRI. The machine was in a tandem trailer.(Please lets not even get into that conversation). but the machine was operable regardless of the surroundings. I got the call yesterday. My tumor was getting restless and has made some changes, nothing significant. But enough to put me in panic mode again. So they will watch and see. If i were to go by webmd, i would have been two years ago. So i am so not going there again. There is not a day I dont think about this thing in my head. You wash your hair you feel the scar you get a headache you think is my tumor growing again? Bottom line.
1. OLiogodendrogliomas do not go away, there is no cure just maintenance of it.
2. Dont go to WebMd. Everyone IS different.
3. If something doesnt feel right go get it checked out.
4. If the meds arent helping, there are so many more out there to help control the seizures.
5. If you dont like your doctor or not comfortable with the doctor, just like meds there are so many others out there.
Sorry this is so long.
My husband knows my results, but I am not telling my two boys at this time. One is 22 and the other 17. The 22 year is graduating from college in May and then is headed to China for a year. I will not jeopardize his adventure with my issue.
The other is a senior in highschool, graduate in June. He was home when the first one happened. Messed him up big time. So until its to a vital point of surgery or what ever else they may or may not have planned for me. My lips are sealed.
Im 55 but was initially diagnosed when i was 52.
Thanks for listening.
Carol
(excuse the bad sense of humor) if i dont laugh I will cry.