have any of you long timers start with anaplastic oligodendroglioma, grade 3????

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have any of you long timers start with anaplastic oligodendroglioma, grade 3????

by vwxyz on Sun Oct 28, 2012 11:32 PM

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I have read a lot of peoples long term success stories, and Hurray for ALL of you, but NO stories so far of  "long term" survivors STARTING FROM THE BEGINNING with Anaplastic Oligodendroglioma, GRADE 3.  

Are there any of you out there??  Where did you go for treatment, Drs, treatment programs, how long have you beat the odds?  How many years?   I really need to know.  Thankyou.   J. 

RE: have any of you long timers start with anaplastic oligodendroglioma, grade 3????

by misskittycat68 on Tue Oct 30, 2012 01:29 AM

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On Oct 28, 2012 11:32 PM vwxyz wrote:

I have read a lot of peoples long term success stories, and Hurray for ALL of you, but NO stories so far of  "long term" survivors STARTING FROM THE BEGINNING with Anaplastic Oligodendroglioma, GRADE 3.  

Are there any of you out there??  Where did you go for treatment, Drs, treatment programs, how long have you beat the odds?  How many years?   I really need to know.  Thankyou.   J. 

yes my husband diagnosed 1998 right after surgery to remove the tumor the dr told us he thought it was a grade 2 . Well we never knew any different ( we never got a finally path report but didnt ask for one )  until his recurrence this year in march they did a Mri and found the recurrence and the mri report said it was a anaplastic Oligodendroglioma grade 3  and i was very upset and thought they made a mistake but come to find out it always was and for over 13 plus years we never knew. Maybe that wasnt such a bad thing we got on with our life he had hardly any side effects from the tumor took a couple dilantin daily for seizure. He worked we raised our sons and life was good. Now of course he has some complications from this last surgery and treatments and he is on disablility now . just finished radiation the end of aug and chemo temodar with it. had mri a month later it came back stable did temodar for 5 days did a mri last week and it came back with some enhancements on it so we are going to see our head Neuro Oncologist at the U of M ann arbor Mi this friday to see if he thinks the tumor is growing again and what he will do with the chemo . If you would like to ask me any other questions feel free it is good to talk about it.

Kitty

RE: have any of you long timers start with anaplastic oligodendroglioma, grade 3????

by TrustinginGod on Tue Oct 30, 2012 03:30 AM

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Misskitty, Does your husband have the deletions? From what I have read, that makes a big difference.

RE: have any of you long timers start with anaplastic oligodendroglioma, grade 3????

by vwxyz on Tue Oct 30, 2012 03:46 AM

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13 years before reaccurance.  Awesome.  J.

RE: have any of you long timers start with anaplastic oligodendroglioma, grade 3????

by vwxyz on Tue Oct 30, 2012 03:57 AM

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?  I am trying to understand.  Did they say he had Anaplastic Oligo., Grade 3 from the beginning 13 years ago?  I have read a lot of people live a much greater time starting with Grade 2, a longer quality of life. 

RE: have any of you long timers start with anaplastic oligodendroglioma, grade 3????

by misskittycat68 on Tue Oct 30, 2012 10:28 AM

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yes from the beginning. He does not have both deletions either just on 1p. But he was 35 at diagnosis and they removed all of it ( so they say)  and they did radiation 30 treatments after surgery no chemo at that time. Currently with this 1st recurrence over 13 years later they did surgery to remove what they could 90% but it is real close to the motor strip. they also did Re-radiation 28 treatments chemo drug temodar while getting the radiation. We believe he had this tumor at least two to three years before diagnosed it started out as leg spasms he thought his back was causing the leg spasms. Until the spasms got worse and turned into a grand mal seizure forth of july weekend 1998. Doctors told him at that time he probably partied to much over the weekend. Second week in Oct 1998 he had another GrandMal at that time they did a CT scan and found it. 

RE: have any of you long timers start with anaplastic oligodendroglioma, grade 3????

by misskittycat68 on Tue Oct 30, 2012 10:49 AM

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On Oct 30, 2012 3:30 AM RAllen wrote:

Misskitty, Does your husband have the deletions? From what I have read, that makes a big difference.

No only on 1p.    but he was only 35 at diagnosis and the whole tumor was removed  he did have 30 radiation treatments after surgery the first time no chemo at that time.

RE: have any of you long timers start with anaplastic oligodendroglioma, grade 3????

by misskittycat68 on Tue Oct 30, 2012 10:53 AM

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On Oct 30, 2012 3:46 AM vwxyz wrote:

13 years before reaccurance.  Awesome.  J.

I think that is a long time from what ive been reading. And he dont have the deletions only on 1p.  Must be they got all the tumor and the 30 radiation treatments he had after surgery and that he was only 35 at the time.

kitty

RE: have any of you long timers start with anaplastic oligodendroglioma, grade 3????

by TrustinginGod on Tue Oct 30, 2012 01:26 PM

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Thank you! This gives me hope for my husband. I have always heard it will reoccur after 3 to 3 1/2 years. I am thankful to hear your husband went 13 years! Thanks for sharing!

RE: have any of you long timers start with anaplastic oligodendroglioma, grade 3????

by HONEYCOMB1968 on Wed Jan 09, 2013 03:30 AM

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my oncologist said 15 years is the no going back line, he would then declare me cured well mine started in november 1999,  so i'm almost there I really hope that i actually say i beat it but i'm so thankful that god gave them the knowledge and know how to treat me and gave me the strength to fight it kitty i hope mine stays away and its a quick fix for your husband to live a longer life god bless everyone

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