oligodendroglioma grade 2

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oligodendroglioma grade 2

by Cllblldllkpl on Tue May 29, 2012 10:36 AM

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Hi my name is Cheryl and I am 37 years old.

On 4-20-2012 I had a seizure and my husband called 911. I was diagnosed with aOligodendroglioma grade 2 after an MRI. I kept me on steroids the whole weekend and did surgery on 4-23-2012.  They said they got 100% of the tumor.  Now I am doing 1 year of Temador.  I am not doing radiation. I have a 7 and 9 year old that has Down Syndrome.  I am so worried that I will not be around long enough to see my kids grow up and I am really scared.  I also cannot sleep since I got home from the hospital.  I am taking Keppra which they said is for seizures.  They told my family the life expectancy is 3-5 years.  Can anyone tell me how long it took them to recover once they got home? Any other advice?

Thank you

Cheryl

RE: oligodendroglioma grade 2

by karynk on Tue May 29, 2012 12:57 PM

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Hi Cheryl!

Welcome!  I'm going to cut to the point here.  I'm not sure where you are receiving your treatment, but a grade 2 oligodendroglioma with 100% resection does NOT have a life expectancy of 3-5 yrs in most cases.  The average for an oligo 2 is 10 yrs, which is even higher if your tumor is removable and has the deletions.  A grade 3 tends to have the 3-5 yr survival.  My husband has a oligo-astrocytoma (it's a mixed tumor) that started as a grade2 and upgraded to a grade 3 in 2007 - his tumor has always been mostly inoperable but yet he has lived with it for 11 years now.

When my husband's tumor was a grade 2, he was back to pretty much normal routine a few months after his surgery and radiation (he did chemo much later). 

My advice is to search on this site for others that have oligo's and read their stories.  Many here are long term survivors and their tumor's have very little impact on their lives. 

I hope this helps a bit - I'm sure someone will post actual links to statistics, but a simple search on google for oligodendroglioma average survival should give you some good info.  Just don't spend too much time reading all the technical stuff... :)

-Karyn

 

RE: oligodendroglioma grade 2

by dmercer on Tue May 29, 2012 04:32 PM

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Cheryl,

I was 37 in Nov 2010 when I was diagnosed with Oligo 2 in right parietal/occipital lobes. Had surgery with an estimated 90% resection. I did have radiation and Temodar and then 10 rounds of 5/28 Temodar. I also have the 1p 19q deletions. Do you know if you have these? Also, where are you being treated? I think everyone here would agree that one of the first things you should do is get connected to a major brain tumor center so you can be treated by a neuro-oncologist. It is troubling that your family was told that low of a median survival. I've been on this journey for going on two years now and I have yet to meet someone who was told those kind of numbers. Even the most dire numbers of old research is in the 7-9 year range for Oligo 2. A recent study of Oligo grade 3 who had chemo and radiation who had the deletions had a median survival of 14 years. As others said the fact that you had a total resection, you have low grade, and if you have the deletions, then that puts you in a best case senario as strange as that sounds. Anyway, stay connected. If you let us know where you are this group can reccomend some great hospitals and doctors for you.

Grace and Peace, Danny

RE: oligodendroglioma grade 2

by Cllblldllkpl on Tue May 29, 2012 04:38 PM

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Danny,

Thank you so much for the information.  I am near Austin Texas.  I see Dr. Groves who is a neuro oncologist who studied and worked at MD Anderson in Houston.  He is great and does not sugar coat things which I like.  He did tell me that I have the 1p 19q deletions which they said was a good thing.  Right now I am doing Temador once a month for only 5 days each month.  I have only done it 1 month so far and it was fine.  I did not get sick.  So far so good I guess.  I am back to work as of today and trying to just take it one day at a time.

Cheryl

RE: oligodendroglioma grade 2

by Ducks-n-Row on Thu May 31, 2012 01:49 PM

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Cheryl,

Welcome to the club that no one wants to join. As we all are guilty of is "surfing" the internet looking for info. As most looking for that "prognosis". The one thing that all that info does not tell you is that the information is combined over years of treament etc. Medicine has changed and is constantly changing to date. As with all this our treatment has an affect on each one of us as we are unique. I was on temador for 2 yrs. It did caiuse fatigue and what I call the "fog". I was aware of my surroundings but things were a little "fuzzy". Just give yourself time to recover and dont puch yourself to hard. When your body tells you to rest then you listen to it. You will be around to see those kids grow up.

HOPE

Damon

Dx NOv 07......No regrets

RE: oligodendroglioma grade 2

by Peasous on Thu May 31, 2012 11:45 PM

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On May 29, 2012 10:36 AM Cllblldllkpl wrote:

Hi my name is Cheryl and I am 37 years old.

On 4-20-2012 I had a seizure and my husband called 911. I was diagnosed with aOligodendroglioma grade 2 after an MRI. I kept me on steroids the whole weekend and did surgery on 4-23-2012.  They said they got 100% of the tumor.  Now I am doing 1 year of Temador.  I am not doing radiation. I have a 7 and 9 year old that has Down Syndrome.  I am so worried that I will not be around long enough to see my kids grow up and I am really scared.  I also cannot sleep since I got home from the hospital.  I am taking Keppra which they said is for seizures.  They told my family the life expectancy is 3-5 years.  Can anyone tell me how long it took them to recover once they got home? Any other advice?

Thank you

Cheryl

Hi Cheryl!!

My name is Chris I was diagnosed with an anaplastic  Oligodendroglioma-Astrocytoma grade 3 in 1997!! 15 years ago..I was 27 at the time!! My tumor was only partially resected they got about 90% I went through 32 sessions of radiation and 6 rounds of chemo(each round took a month and a half) which basically killed the rest.I also take Keppra for seizures and have no side effects from it. I found out last week that I have a recurrence. My original tumor was about the size of a small grapefruit 3" by 5"  the new tumor is about 1.5" by 2" I will be going for surgery on June 6 2012 and my surgeon thinks he will be able to get it all this time!!! after that it's temador and focal radiation and I'm good to go!!!!    Cheryl..I wanted to tell you how bad my situation was and is, only to let you know that there is hope!!! ?They gave me 2 years...15 years ago!! Have faith in yourself and be strong!! There are new and better treatments being developed all the time!! As for recovery,that is up to you, the surgery to remove my tumor caused me to have a stroke and paralysed me on my left side the doctors said I would probably never walk again but I refused to believe it and I worked my butt off to get out of the wheelchair!!  I still have to wear a brace on my left leg but I am walking!! What I,m trying to say is that you play a big part in what happens to you!! I know it's hard but try not to be scared, you can win!!  Sleep will come in time and your life will return to normal.Hug and kiss your kids everyday!!!!! they are your inspiration to fight!!! I am always available if you have any questions or just want to talk.

Chris

RE: oligodendroglioma grade 2

by bebron on Mon Jun 04, 2012 02:21 AM

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Hi Cheryl,

I normally don't post on these sites but I felt like I needed to share "our" story. I say "Our" because when you are married, it is not just one who is going "through". In March 2011, I woke up to my husband (42 yr old Phys Ed teacher, never been sick a day in his life!) having a grand mal seizure. Later that afternoon, he was diagnosed with an oligo in his left frontal lobe (found out after surgery it was a grade 2).  Days later, he had a full resection. He was not put on temodar nor did he have radiation (just "watch and wait" approach - MRIs every 6 months). I love his Neurosurgeon because has the best bedside manner and is like family to us now.  When my husband was not in the room (during his first follow-up appt) I came right out and asked about survival time and he looked at me like I was crazy. He told me there is no reason to think he will not live a normal life. He was honest with us that there is always the chance of a recurrence, he also said there is a chance it will not return.  I read another brain tumor survivor's blog recently and he titled one post "Lies, Da** Lies, and Statistics". The point of the post was his oncologist gave him 2-3 yrs of life and 10 years later, he was sitting there blogging. So, live your life. Keep the faith. Embrace the hope of your future and just love on your family! (I am preaching to myself here really...have to remind myself that none of us are promised tomorrow). I wish you and your family all the best. Please keep us posted and I will do the same.

RE: oligodendroglioma grade 2

by mlmcclelland on Mon Jun 04, 2012 02:42 AM

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Hi Cheryl,

 

I also had a Oligodendroglioma grade 2, and am 39 years old. I was diagnosed in August of 2011 after going to the Doctor telling them for a YEAR there was something wrong. I had time to search out a Neurosurgeon in my area and went to 3 before making my decision. I had surgery and 95-98% removed in December 2011, and just to make sure they thought I should go through radiation for 6 weeks to get the rest of the tumor that remained.  I finished radiation in April and felt good most of the time expect for being tired a bit. As for a life expectancy, I was told that we are not statisics and everyone is different. Just keep the faith. I came home 3 days after my 13 hour brain surgery and was feeling pretty good in a few weeks. Just take your time and it will get easier. I had a follow up MRI a few weeks ago and they do not see any signs of my tumor, just the hole where it was removed! I still have to have MRI's every 4 months due to it can come back, but I am keeping the faith that it will not! I have two children too and that was my biggest fear in the beginnning not to see them grow up and get married etc... but now feel that no one is promised tomorrow and we have to live life everyday and make the best of our situation!  I have been on Keppra since August 2011. I have not had any issues with it but maybe talk to someone about getting some medicine to help you sleep my neurologist told me if I couldn't sleep she would help me with that. Keep a positive attitude if you can and just take one day at time.

Take Care,

Laura 

RE: oligodendroglioma grade 2

by Cllblldllkpl on Mon Jun 04, 2012 11:54 AM

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On Jun 04, 2012 2:42 AM mlmcclelland wrote:

Hi Cheryl,

 

I also had a Oligodendroglioma grade 2, and am 39 years old. I was diagnosed in August of 2011 after going to the Doctor telling them for a YEAR there was something wrong. I had time to search out a Neurosurgeon in my area and went to 3 before making my decision. I had surgery and 95-98% removed in December 2011, and just to make sure they thought I should go through radiation for 6 weeks to get the rest of the tumor that remained.  I finished radiation in April and felt good most of the time expect for being tired a bit. As for a life expectancy, I was told that we are not statisics and everyone is different. Just keep the faith. I came home 3 days after my 13 hour brain surgery and was feeling pretty good in a few weeks. Just take your time and it will get easier. I had a follow up MRI a few weeks ago and they do not see any signs of my tumor, just the hole where it was removed! I still have to have MRI's every 4 months due to it can come back, but I am keeping the faith that it will not! I have two children too and that was my biggest fear in the beginnning not to see them grow up and get married etc... but now feel that no one is promised tomorrow and we have to live life everyday and make the best of our situation!  I have been on Keppra since August 2011. I have not had any issues with it but maybe talk to someone about getting some medicine to help you sleep my neurologist told me if I couldn't sleep she would help me with that. Keep a positive attitude if you can and just take one day at time.

Take Care,

Laura 

Laura,

Thanks so much for responding.  This is all so new to me and my mind is just going in so many directions.  I went to the oncologist last Friday and told them what was going on with my sleep.  I had not slept since I got home from the hospital except for like 3 hours a night.  It turns out that I still have swelling in my brain and I had to go back on the steroids.  I was able to sleep this weekend for the first time.  I also am taking Keppra and it seems to be working fine for me.  I am not doing radiation but they have me doing the chemo pill.  I start my second round next week.  I am feeling much better about a positive attitude after getting sleep this weekend.  I will admit before this weekend it was hard to be positive but it was due to lack of sleep.  Thanks for the help.

Cheryl

RE: oligodendroglioma grade 2

by kwyattm on Mon Jun 04, 2012 02:05 PM

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Hi Cheryl!

I'm sorry to hear about your diagnosis, but know that you're not alone!  I was just diagnosed with an oligodendroglioma myself at the end of May.  But you have two things going for you that I don't: 1) Your surgery was 100% resection (mine was 90%, which is still pretty good) and mine was grade 3.  Regardless, I see a lot of the same scary survival statistics that you do, but you have to realize that there are a lot of factors in those numbers that don't apply to you.  I'm also a cancer researcher (use quite a bit of statistics) so I know what I'm talking about! :)

A lot of people that get these diagnoses are already pretty sick when they get them and don't last very long because of what are known as "co-morbidities."  Imagine someone coming in with seizures that also has diabetes and heart disease, gets diagnosed with an oligodendroglioma and lasts 6 months: that's not necessarily because of the tumor, and those early death statistics also include people that get hit by a bus!

I was first diagnosed with GBM grade 4, which is a bad momma!  That has median survival time of 3.5 years after diagnosis.  Realize what median means as well: 50% of the people die before 3.5 years, and 50% die "after 3.5 years."  That could mean 3 years, 6 months and 1 day all the way up to watching your kids retire!  You really have no idea.  And it's not a coin toss who gets the longer life: it's a function of how well you take care of yourself, the type of treatment you get, how closely you monitor your tumor, etc..  Please also realize that most of these studies are "old."  I read one study on oligodendroglioma published in 1997.  It described a minority of patients that survived 20 years.  Well those patients had been diagnosed in 1977!!!!  Jimmy Carter was president!!!  That's a far cry from 2012, where by the end of the year a human DNA sequence can be attained for <$1000 in 15 minutes.  Compare that to 1977 when the first DNA sequence EVER was generated.  Things change REALLY fast and new therapies come out all the time.  So take those statistics with a grain of salt.  Like I said, you've got a lot of things going for you that I don't, and I've told my wife I fully intend to be at our 50 year anniversary (which will be in 48 years).  We also have a 1 year old. :) When I asked my physician about my prognosis, he said, "Well, it's better to NOT have a brain tumor. . . ).But I and my oncology team all believe there is a lot of hope for this.  I'll start my Temodar soon, and it sounds like these things are really sensitive to this treatment (especially if you have a certain deletion/translocation - I don't know if your physician has spoken to you about this yet).

Bottom line, you've got a lot of good things going for you.  Those numbers are scary, but they really just don't tell the whole story.  Keep your head up and just keep going.  I think if you have faith, you'll be able to watch everyone grow up!

Good luck!!

Wyatt

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