What's your Oligodendroglioma story?

Thank you for your response. I don't know if he has any deletions, he did not want to know. They took the blood test, but he did not want the results. I would like to know.His tumor was a grade 3.

On Mar 28, 2012 2:21 AM virgo228 wrote:

Hey. This is my first post. Like most of you I came here searching for hope. My husband was diagnosed with a oligodendroglioma, grade 3 last month. He has surgery and it removed almost all of the tumor. Now he is on Temodar and getting radiation 5 days per wk for 6 wks. I am so scared! He is only 32. We have two small kids. I need to know that we will grow old together and see our grandchildren. Reading some of the posts here have given me hope that his life expectancy will be longer than the standard 3-5 yrs given by the oncologist. I just wish I knew what to do. Has anyone been to MD Anderson?

I was 36 when I was dx with Oligo 2 w co-deletion on Sep 2008. Surgery 98%-100% removal with Nicholas Levine at MD Anderson on Oct 2008. I blessed to be able to use brain suite for that surgery since location of my tumor was difficult. I believe MD Anderson is one of the best in the country, either #1 or #2 for brain tumor/cancer.

They found my tumor after I got general seizure. It was golf ball size. I stopped Keppra about 3 months afterward and seizure free for 2 years before last year I got 7 episodes of seizure so I came back to Keppra. This year so far had 3 already, last one is last night for about 3 mins with aftermath weakness another 10 mins. So far MRI shows clear but with seizures coming back, my N-Onco said tumor cells growing on the delicate part of my brain and causing those seizures. Still monitoring closely every 3 mo now. I'm optimistic that, God's will, I can beat this for good or at least see my daughter get married, she will be 11 next week. :)

i agree my husband had anaplastic oligos removed in oct 1998 and followed by radiation and he just had his first recurrence last month had surgery again 4-27-12 and will meet the drs next week to talk about chemo ( first time for chemo)  and  radiation again. I think he has already beat the odds.

my husbands is a anaplastic oligodendroglioma grade 3 dianosed in oct 1998 surgery to remove it they said got it all was followed by 6 weeks radiation no chemo at that time. he just had his first recurrence this april 27 2012 almost 14 years . We believe the surgery and radiation kept it from coming back for so long. This time around they did surgery to remove it again they are also going to do radiation again called re-radiation because it has been almost 14 years and they have found out it is possible to have it again. also they are putting him on temodar for full 30 days of radiation and then he will go on it for 1 week out of the month they said up to two years or longer. They also did the fish for deletions and found he does not have both deletions 1p and 19q he only had deletion on 1p but has lived longer than the studies show for patients that have both deletions ?  So i dont know what to think about that. My husband starts his treatments this week . Good Luck to you all and may god bless you all!

Sounds like your husband has received good advice and he has followed it. God bless him. I hope he has another 14 trouble-free years in front of him.

i was 20 when found mine had sur then chemo which i quit cause they didnt have good stuff then 5 perc went to brain and sick all day every day.did radiation when was 22 temodar 2 yrs ago avastin now.for last 7 months.my left arm dont work walk with a limp.told me had 9 yrs to live when was 20.just hit 14 yr mark in june....all about attitude if say fk u to dr im not a number or stat.so dont just listen to wht "drs"say

sounds just about like my husbands it is on his right side motor stripe area and he has trouble with left foot and left hand. Good luck to you and hope you have many more wonderful years.

I was diagnosed in March of 2011. I have an Oligodendroglioma in my left frontal lobe. I have had surgery and they got approximately 90% of the tumor. I am a nurse, this was extremely hard in the beginning because I wanted an ANSWER- How long do I have? After all the research and statistics onboard the conclusion is noone knows. We as Humans are all individually set with this code of what our bodies are going to do. There is NO Answer.. The Truth is we are not guaranteed the next 5 minutes or the next 20 years. I think the Key for me was recognizing this is WHAT IT IS. I have Brain Cancer.

I have to go every three months for the MRI and my heart drops. I have the worst anxiety that overcomes me. I am learning to deal with this anxiety. I am not on any antidepressants. I explained to my doctors that I am on enough medication and do not feel the need for more pills than I need.

The Brain is central command and it mainly operates off sugar. Depending where the location in your brain and the type of cancer does play a role. There has been people with GBM (glioblaste multiform) the worst one, live for 20 years.

I can sympathize that you want a definate answer of how long.. I feel the same, I have two children that I am facing that I will someday leave them. Please take your spouse and love her with all you have. This in my life, with my family and friends has been the best support I could have ever thought possible.

Peace to you and your family..

Kimberly

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.

I'm sorry to her about your wife.  My oligodendroglioma was identified in 1987 (right temporal lobe) when I was 16.  It was completely removed in '91.  So, I've had 25 very good years so far. I take anti-anxiety meds, but that is all.

Part of the reason the published survival times may seem low is that they do not account for the age at which you are diagnosed.  People dignosed early in life generally have longer survival times than those dignosed later in life. A lot of people get diagnosed late in life, and thus have very short survival times.  This biases the sample.

Weirdly, a close friend died of this in 1986 after three years of treatment, shortly before mine was identified.  Odd happenstance.  I've always wondered if we were both exposed to some pathogen.

Good luck to you both.

Wow! 25 years? You're my hero. My neurologist talks regularly about patients on Temodar with chromosome 1P and 19Q deletions. They are clearly beating the "averages" regularly. I think we have a lot of reasons to be positive. I am at 8 years so I hope I am a rookie.