Though guidelines suggest screening starts at 50, researcher says it's premature to change them
by vwxyz on Sun Apr 10, 2011 10:07 PM
I am looking for "truthful complete" information regarding the above condition. How, when, and where it was treated. Is there anybody out there longer than 2-3 years? Longer than 5-7 years? Longer than 7-10 years? ETC. J.L.
by leoecam on Mon Apr 11, 2011 03:03 PM
My husband has been living with AO for 2 years and 10 months, but there are others on the Braintrust board that have been around seven and ten years.
by jefuchs on Mon Apr 11, 2011 04:06 PM
All I ever see is long-term survivors. It seems everyone beats the odds on this desease. Since it's not statistically possible for everyone to beat the odds, I have to conclude that the odds are all wrong.
One of the administrators at cancerforums.net is an 18-year oligo patient. I recently firended a guy on Facebook who was diagnosed in 1988.
Problem is, when I see these success stories, they don't always say what grade their tumor is, so that's not a lot of help. But it's been nearly a year and a half that I've been searching for people's stories online, and I've only seen two accounts of people dying from this disease (not counting the medical studies, which give a very grim picture).
For whatever reason, the medical community publishes very scary statistics on survival rates. I can't explain why they don't match up with the personal stories I find through messageboards. I do know that the GBM patients here, and on other boards, seem to have a mortality rate that closely matches the medical literature. Just browse the postings here to see for yourself.
I cannot explain why oligo patients have such vastly different outcomes from medical literature, but I'm hoping my wife beats the odds like all these other people I've found.
by karynk on Mon Apr 11, 2011 07:19 PM
My husband's is an anaplastic oligoastrocytoma (means that both oligo and astrocyte cells are present.) He was dx'd in 7/2001.
Longest survivor - I believe it's George Plym w/ 11 tumors since 1967. The early ones were all either oligos or astros or some mixed variety. You can read his story on his site.
by TrustinginGod on Tue Apr 12, 2011 08:15 PM
What is the "Braintrust" board?
by TrustinginGod on Tue Apr 12, 2011 08:24 PM
My husband had his 2month check-up today. The doc says they have no uniform treatment for grad 3 anaplastic oligodendroglimas, that they treat them as they do the grade 4. I know he told us 5 times on this visit that my husband's life expectancy is 3 years. I don't quite understand this since he had his tumor removed and he is doing so well, why does he keep telling us 3 years????? I didn't want to bring this up, I guess I didn't want to hear his response since he is stuck on this 3 year thing. His mri shows no change, which the doc says is a good thing. I really need to hear that 3 years is not the truth. He is 53 and I am 48. We have a 24 year old son and a 10 year old daughter. My husband is working everyday. He is in management and works 50-60 hours per week, doing very well. He has never been sick from the temador, just tired. The doc tells us he is doing much better than he would have ever expected.
by jefuchs on Tue Apr 12, 2011 09:02 PM
If you've read my post above, you know that I feel the same way. My wife was diagnosed nearly a year and a half ago, and is doing very well. But her diagnosis may be grade 2. It's not certain. Doctors say it's likely a grade 3 because of how it has grown.
Doctors won't even discuss a prognosis with us, so we have no idea what they're expecting from treatment. We also are seeing no change in the MRI, and my wife has not had surgery. Everyone's story is different, and as your doctor said, there's no standard treatment.
It took me a year to stop dwelling on that 3.5-year gremlin. The more long-term survivors I found, the less faith I had in any prognosis they could give us. I've gotten over my depression about it, though I'm still not back to normal. I don't think I'll breathe easier until we get past that 3.5 year mark.
by GBMhubby on Tue Apr 12, 2011 09:34 PM
Prognosis depends on age and the status of the 1p/19q mutations. Current expectations of survival can be readily found by looking at trial results, such as the one below which shows that half lived (median overall survival, OS) beyond 43 months.
by karynk on Wed Apr 13, 2011 07:30 AM
Don't get too hung up on the statistics or what a doctor says. I know from my experience with my husband being just shy of a 10 BT fighter that doctors really aren't that good at guessing, and sometimes you can beat the statistics. If I believed what we have been told in the past - my husband would have been gone 3 times already. But yet, I can hear him eating his breakfast right now. Just get all your legal stuff in order, so that is off your plate - and live each day for TODAY.
I have been where you are - looking for hope of better numbers. You will get to the place that what the officials say doesn't matter.
by TrustinginGod on Wed Apr 13, 2011 02:47 PM
You know when we went for my husband's appt yesterday we asked if there was a way to tell how long it had been there and he said no. He did tell us that if it had been a grade 2 when they found it, they would not have done the surgery until it was a grade 3 because more than likely, it would have come back faster and it would cme back as a grade 3. I have so much to learn about this. My husband will not let me ask any questions when I go with him to the doctor. He said if I start asking a lot of questions, we will not allow me to be in the room with him anymore. I made the mistake of telling the doctors when he wasn't feeling well and sleeping a lot in the beginning after his surgery and he was so mad at me that he said if I ever ask or tell anything about him without his permission, he will not allow me to go in his apppointments. I have so many unanswered questions but what can I do???? I try not to dwell on the 3 year mark as well but when you see the doctor and he keeps pounding that number at you, it's only so much you can take. I am trying to live life with him to the fullest NOW but when I am alone, I get so depressed and just cry. It is really hard for me to deal with. I can only imagine what he is holding back inside.
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