What's your Oligodendroglioma story?

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What's your Oligodendroglioma story?

by jefuchs on Thu Mar 31, 2011 02:31 PM

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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.

RE: What's your Oligodendroglioma story?

by karenhasch on Thu Mar 31, 2011 08:00 PM

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I agree with what you say about publishing information that I hope is wrong.  I was diagnosed almost 6 years ago with a grade 2 Oligodengroglioma and was scared to death because of everything I read.  I went to 5 different doctors and got 5 different opinions on what I needed to do.  I went with the most conservative opinion.  They were all so different!  I was getting MRI's every 4 months to keep an eye on the tumor and last summer it started to spread.  My doctor did not want to try and remove any of my tumor because it's partly in my motor skill area, so here I am now, just started taking Temodar last summer and have 5 months to go and my last MRI showed that it has shrunk in width from 16mm to 11 mm.  I was estatic and hope it continues.  I think there's nothing you can do with this type of tumor but watch it and have faith you'll out live the stats.  Even though we do well on Temodar it still is a fight to keep taking it.  Good luck to her!

 

RE: What's your Oligodendroglioma story?

by PhilV on Thu Mar 31, 2011 08:34 PM

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I was diagnosed with Oligo in 2002 deep in my left temporal lob witch controls a lot of your memory and other things. I had to make a month long trip to MD Anderson in Houston and they were able to remove 85% and a year on chemo was able to take care of the rest.

I'm at 9 years now but still working on recovery because it took a while for me to be able to read and right or even remember simple words and names of friends. This was all mainly because of the location. Another oligo survivor in a group I'm with has been going threw a totally different situation. He has had to have two operations in a short period of time and is now on  Temodar. His memory is still good and does all the family book work..

My last MRI's have all looked good.

Good luck and I hope it all goes well.

RE: What's your Oligodendroglioma story?

by phoff29993 on Thu Mar 31, 2011 08:41 PM

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You and I have communicated before.  I was diagnosed with Oligo II in Nov. 2004, so I have been at this about 6 1/2 years.  I am doing great.  Work, play golf, have a few beers, etc.  In fact, tomorrow I am leaving for South Carolina ( I live in Ohio) for 10 days to play golf with my son.  I have no symptoms although I do take medication for seizures.  In other words, my condition seems completely manageable for now.  My doctors told me a year ago that I would certainly live another 5 years but probably not 10.  My doctor also said that he has a patient that is still alive 18 years after diagnosis.

Hope this helps.

RE: What's your Oligodendroglioma story?

by jefuchs on Thu Mar 31, 2011 09:05 PM

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Yes, I remember your story.  The reason this comes up again is because I met an oligo patient on Facebook this week.  He was diagnosed in 1998.  He's 60 years old, and seems to be doing well.

I don't want to pretend this is nothing serious, but I feel we're not getting current info from the medical community.  The doctos don't like to discuss my wife's prognosis, so I rely on what I can find online. 

RE: What's your Oligodendroglioma story?

by phoff29993 on Thu Mar 31, 2011 09:12 PM

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I have had a similar lifespan discussion with my doctor.  He attributes a lot of this lifespan improvement to Temodar which became available in the mid 90's.  Let's hope there are a few more discoveries around the corner.

RE: What's your Oligodendroglioma story?

by karenhasch on Fri Apr 01, 2011 02:57 PM

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My Oigo ll sounds like yours.  I've had it for 6 years and am doing great.  I'm on Temodar right now.  Why would your doctor tell you that you have another 5 years but probably not 10?  I'm curious.  My doctor told me that the Temodar would probably contain my Oligo ll for about 5 years and then who knows what they'll come up with.  I've never had any seizure symptoms so I refused the seizure medicine.  I just get tired of taking drugs that I don't need.  

PS- I'm originally from Ohio.... where at in Ohio are you from?

 

RE: What's your Oligodendroglioma story?

by phoff29993 on Fri Apr 01, 2011 04:38 PM

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I had the 5 but not 10 discussion with my oncologist.  He tends to be a little more negative than my neurologist who is more like your doctor.  My Oligo first manifested itself in the form of seizures so I have been on seizure meds (Trileptal) right from the beginning.  Can't say whether I need them or not.  All I know is that I take them twice a day and I don't have seizures. I may sound a little naive but I think the world of my neurologist.  He says "take em" and I take em.

I took Temodar as my first round of treatment. One year, 5/23 regimen and was off for about 4 years.  Never had surgery and probably never will.  Location is a little tight.  Just finishing up a year of Cytoxin, another drug. No question that it gets tiresome and frustrating taking all of the meds.

I live in Aurora, Ohio, southeast of Cleveland.  I receive treatment at the Cleveland Clinic.

Good luck to you and stay in touch.

RE: What's your Oligodendroglioma story?

by karenhasch on Fri Apr 01, 2011 07:00 PM

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How funny, I'm originally from Youngstown!  My oncologist is also not as positive as my neurosurgeon.  I'm the same way, I just love my neurosurgeon and pretty much listen to everything he says.  I just had my biopsy last summer and that's when they confirmed the Oligo and I started the Temodar for 5/23.  It really seems to be working since my MRI's show a shrinkage of 5 mm.    My Oligo is also in a bad place, corpus callosum, so I can't have a full resection because of my motor skill area.  As long as things keep going the way they are, I'm happy!

You take care and continue feeling good!

RE: What's your Oligodendroglioma story?

by dmercer on Fri Apr 01, 2011 07:42 PM

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I appreciate you posting this question. I have wanted to ask the same. I was dx oligo grade 2 in Nov 2010. Had sx with partial resection, not sure of the %. Started 6 weeks of radiation and Temadar, which will continue for a year. I have wondered if the reason we don't see many with oligo's nearing the end of life is because they transform into another kind of tumor. So, now when they write, they are writing and refering to the new kind and not the oligo. Just a theory. I am 37 with 4 kids ages 8-14 so I sure hope and pray I can outlive the numbers.

 

Grace and Peace,

 

Danny

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