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Oligodendroglioma

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pfizenmaier
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Subject: Oligodendroglioma
Date: 04/19/2008

Hi, I am new to this site.  Right frontal lobe, I was dianosed with an oligodendroglioma in 2003.  I did 6 weeks of whole head radiation and a resection.  I had another resection in 2005 and started on Temador, I did 1 year of this chemo.  In 2006 did another resection and started back on the Temador for 6 months.  In 2007 they found a tumor at my brain stem,(in the 4th ventrical)  I did Gamma Knife for that tumor.  Now...The cells leaked and ran down my spine.  Now I'm not sure what to do.  I have 2 children 17 and 15, My 17 year old graduates this year, but I really wanted to see both of them graduate and grow, get married and have kids.  And I was looking forward to retiring with my husband of 12 years.  Does ANYONE, know of any treatments ANYWHERE around the world?

Darla P

Subject: RE: Oligodendroglioma
Date: 04/19/2008
My heart goes out to you. My husband of twelve years was diagnosed a year ago with an unoperable oliogodengroglioma in the right frontal lobe. I will pray for you and your family.
Caregiver
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Hyacinths
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Subject: RE: Oligodendroglioma
Date: 04/19/2008

I'm so sorry, Darla. I'm not here because of my own illness (it's my dad), but your children are exactly the ages of mine so reading your message brought tears to my eyes. 

If by treatment you mean cure, then no. Nothing I've read anywhere suggests there's a cure. All you can do is work with the best doctors you can at the best cancer hospital available to you, and try to buy as much good time with your family as possible--hoping all the while, as we all do, that there's the kind of miracle breakthrough before it's too late. It sounds like you've already been through so much, I can tell you're an incredibly strong person.

Can you find your way to living in the moment, instead of thinking about those future events that you're afraid of missing? No one can tell you whether you'll see those things happen for your kids. But even if you were healthy today no one could promise you that. We aren't given to know the day and hour, any of us. But you can plan special days together right here and now...make memories together that will live on in them, no matter what...hug and kiss them a thousand times...teach them what you can in whatever time is given...

My heart aches for you. It's my second-worst nightmare, having to leave my children before they're grown and truly launched into the world (the worst, of course, is something happening to them). You are in my thoughts, and I hope your treatment goes as well as it possibly can.

I'm going to go hug my kids now, but I'll be thinking of you and yours. 

Subject: RE: Oligodendroglioma
Date: 05/21/2008

Dear Darla, I am new to this site as well.   I saw your message of 4/20/08, and I hope that you are doing well. I was diagnosed with a WHO Type 2 oligodendroglioma in the right parietal region in Nov. 2004. Unlike you I have only had a year's treatment with Temodar.  Currently, I am being monitored with quarterly MRI's which continue to show stability.  I have had none of the other procedures you discussed in your recent email.  The reason I am writing to you is that I have the utmost faith in my doctors and would recommend them to you should you be looking for other treatment solutions, which it seems that you are.  I am being treated at the Cleveland Clinic in Cleveland, Ohio, the nations top heart hospital and ranked in the Top 10 in neurology for brain tumor treatment.  The web address for their neurology group is: http://cms.clevelandclinic.org/neuroscience/body.cfm?id=1269

Dr. Gene Barnett is the head of the group.  I am being treated by Dr. Bruce Cohen.  On their website, they have a toll free number plus a list of the various clinical trials that may be available to you.  I hope it will be worth a call for you.

Every day I tell myself that I understand that this is not good LONG TERM.  All I know is that TODAY is not that day.

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