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Anaplastic oliodendroglioma grade 3

sadinholland
Posts: 226
Joined: Apr 2011

Looking for information.......is there anyone on this site with an anaplastic oliodendroglioma grade 3 with either no deletions or 1 deletion that has not had a reoccurrence after 3 years of being diagnosed? Seems like 3 years is when this occurs from what I have been reading.

BenLenBo's picture
BenLenBo
Posts: 138
Joined: Feb 2012

Hello,
My son was diagnoised with Oli-III, he has both 1p19q deletions. Treating facilities are John Hopkin Baltimore,MD, Mayo, Rochester, MN and Roger Maris Cancer Center, Fargo, ND. His doctor's were pleased that he had the deletions. Having both deletions, enhances the treatment of Chemo (temodar) and radiation. Benjamin had 99% of his Left Frontal Lobe tumor removed by surgeons flown in from Mayo. John Hopkins diagnoised and all three came up with the treatment plan to destroy the bad cancer cells- which were like fingers, that like to cross over to the otherside. Benjamin has been cancer free for one year, no side effects from his treatment plan, has MRI's every 3 months, and will continue to do so for 6 years or more. All three facilities have seen patients 10, 20 and 30 years out with Oli-III, with deletions. Without deletions or only one deletion, time is less, because cells are not killed off completely, allowing for regrowth later on. I hope this helps, wishing you never had to go through this, life sure does have its challenges.

Take Care and God Bless!

Carol

sadinholland
Posts: 226
Joined: Apr 2011

Thank you Carol for explaining this to me. I knew it was better to have both deletions but I didn't know why. I knew your chances of a longer life span had to do with deletions. My husband has one deletion and he has been ok for 2 years now. He does have some issues with memory and retaining information if it is a lot at one time butt I am thankful that is all we are dealing with. Although I don't post often, I still follow many of the threads on this site and pray for everyone here. His doctors told us he removed all the tumor in 2010 but there could be infiltrating cells. I try not to worry and enjoy life but I seem to worry more as more time passes since the diagnosis was 3 1/2 to 5 years, although I am praying that he will be here to see our daughter become an adult and have children of her own.

I am glad to hear yourson has the deletions and is doing so well. It's good to hear from people that are doing well. It gives me hope. Their tumor was located in the same area and it sounds like they had the same treatment as well. My husband did 1 year of chemo after his initial radiation and chemo treatment. He tolerated it very well and is having an MRI every 3 months as well. His doctor said after a year of 3 month ones he will move them to every six months if all stays clear. We had one scare with his last scan but it turned out to be nothing, praise God!

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