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How are all the Oligodendroglioma Survivors doing on this site?

BenLenBo's picture
Posts: 145
Joined: Feb 2012

I get frustrated on this site, and just want to know how all brain tumor
survivors or fighters are doing today. I have been on this site since
February, and following a few individuals - but wanted to start a new tread to
make it easier to follow what is the latest news, treatments, and how
everyone is doing?

We are all fighting to beat this evil cancer, and each treating facility has
different treatment plans. What is the best combination?


cindysuetoyou's picture
Posts: 514
Joined: Dec 2009

Hi, Ben.

We aren't doing too good. David is losing the battle.

Right now his treatment protocol is supposed to be Avastin every two weeks, carboplatin every four weeks. It's been impossible to stick to this schedule though. He had a cold so they didn't want to do chemo. Then he got over the cold and had a treatment and it wiped him out. He's worse after the treatments, I think. Avastin has been a disappointment to me. I thought it was supposed to really help with David's symptoms but he only shows a slight improvement for a few days, then he seems to get worse than he was before the treatment. They also postponed a treatment because David had a seizure and when the ER did an X-ray, they thought he had pneumonia. He didn't have pneumonia after all....now today I dragged David to the hospital for a treatment but the bloodwork showed elevated liver values so he couldn't get treated. I hate that we keep putting treatments off, but I don't want him to be treated if it's not going to help him.

I think that the standard of care...the most commonly prescribed treatment protocol.....is surgery to reduce the size of the tumor, then radiation and Temodar, then after radiation is complete, a stronger course of Temodar. Some doctors do a variation of this combination, but this seems to be the basic treatment that most people end up doing. I think it's successful for some people.....David did well for a time on it, but David also had some other factors that really impacted him, like the insurance denying the blood brain barrier disrupter treatment, which is a treatment protocol that we really wanted to try. It made us lose some valuable time. David also did not have the gene deletions that showed an increased sensitivity to chemo. And he had that terrible bout of cellulitus and then blood clots....he's really had a rough road.

I am so glad that you are doing so well, Ben. Everyone who has a good MRI or a good report, or who is out there, enjoying life...it's a victory for all of us and it brings me a lot of joy. Please do not think that David's situation is like the norm for anyone with an anaplastic olidodendrogiloma. Everyone is an individual and everyone responds differently. I think for the most part, that's a positive.

Have a wonderful summer, filled with all the things and people and activities that you love. And please say hi to your mom for me!

Love and blessings,

Posts: 7
Joined: Sep 2011

I feel the ache of your heart, Cindy; just wanted to say that. Life is so hard..I swear.

Steve A
Posts: 1
Joined: Jun 2012

Ben Hi I'm new to this site! A little about me. i'm at 13 months after having my oligodendroglioma level 2. 1p/q19 codeleted! removed at UCI in orange CA! DR linskey did a wonderful job. things getting better.I feel that i am a very luck man. know real problems after surgery except the dylanton was know fun always tired and depressed. I'm done with that now and getting better.
I found this site while looking for info about my situwaytion. I found some positive in reading about people like me that are for the most part long time servivers.
I'm a pretty strong and confadent person! i will beat this. I'm gonna win. PS i couldn't spell befor either. lol hope everybody is having a good day. Steve

BenLenBo's picture
Posts: 145
Joined: Feb 2012

Hello Steve,
Yes, staying positive that you can fight this cancer is great. Don't ever give up! My treating
faciliites Roger Maris Cancer Center-Fargo, ND, Mayo-Rochester and John Hopkins-Baltimore, MD, are
seeing patients with this type of cancer 18/20 years out and some even 30 plus years. I have the
1p/19Q deletions, 99% removal of left frontal lobe tumor, 6 weeks radiation/6 weeks chemo, and
just finishing up Temodar 5 day/28 day in July. All MRI's are clean, no side effects. I take no
medication, except for temodar 5 days. Feeling great, working full-time, hanging with friends,
four wheeling, fishing, restoring 1975 Chevy 4x4, keeping busy. Stay positive!


AshleyWF's picture
Posts: 46
Joined: Aug 2011

Hello Ben,

We are coming up on a year since my fiancé had most of his tumor removed ( Grade 2 oligodendroglioma, left parietal lobe) . We have had three MRI’s with no growth on the remaining. He has had no treatment and is back to normal life (he was back to work 3 weeks after surgery)
MRI’s have been pushed to 6 months apart now. We are engaged and living life to the fullest. The odd headache here and there brings us back to reality (we tend to live in sort of a denial for months at a time)

I agree, this site can be frustrating at times, trying to follow certain things. Thank you for starting a subject I can remember and check to see how everyone in the same type of situation, is doing.


Posts: 3
Joined: Jan 2012

Hi, Ben!

I commented on your other posting. It sounds like we had similar treatments for a brain tumor in the frontal lobe. My tumor was tested, and I also had the 19p genetic defect. My tumor was fairly large, baseball size.

About 10 percent of its cells divided at a higher rate, which pushed the tumor into the Grade III category. The radiologist called it cancer, but when I pressed the neurosurgeon to describe it, he said, "a fairly large tumor with aggressive tendencies."

So far, those aggressive tendencies have been in check. I just marked three years since my surgery.


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