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Oligoastrocytoma Grade III

Olga123
Posts: 3
Joined: Aug 2012

Hello everyone!
I'm new to this site and I'd like to tell you my story. My name is Olga and I'm 28 years old.
I had a seizure in april 2012, soon afterwards I was diagnosed with brain tumour in left frontal lobe. I was operated and had almost everything removed. It was Oligoastrocytoma Grade III and I will have radiotherapy starting tomorrow.
I feel rather miserable, to tell the truth...
My oncologist didn't recommend chemo, because blood test showed that 1 chromosome is missing and chemo wouldn't make any difference. Me and my husband also want to have kids in future (we don't have any) and chemo will influence my fertility.
The oncologist also said that if we do chemo now, in case the tumour reoccurs it can be chemo resistant and we won't have much choice then.
Do you think it's the right decision?

Thank you very much.
Olga

BenLenBo's picture
BenLenBo
Posts: 143
Joined: Feb 2012

Olga,
I suggest you read other posting on this site, you may find you the answer your looking for. My son Benjamin was 28, when diagnoised with OLI-Grade III, he had surgery which removed 99% of the tumor, along with 6 weeks of Chemo/Radiation. Followed with 6 months of Temador (chemo-pill). He has MRI's every 3 months- everyone has been clean. Benjamin has the 1p19q deletions, that determine how effective treatment will be on the tumor. Today, he is doing great, back to work, hanging with his friends and just plain living live.

He did visit the fertility clinic, which was recommended by his Oncologist, for him to beable to have a family in the future. Ask you doctor's about this option for your future family.

Benjamin's treating facilities are Roger Maris Cancer Center, Mayo, and John Hopkins. They have
seen patients 10,20 and 30 year survivals. Anything is possible, just keep fighting and looking for
the care and treating facilities that meet your needs.

Prayers to you as you continue on this journey!

(((HUGS)))

Carol

Olga123
Posts: 3
Joined: Aug 2012

Thank you Carol!
I was reading this site for the whole day yesterday and it seems like almost everyone had chemotherapy.
I have a choice of participating in the trial of Temodal. I mean if I had both 1p19q deletions they would give me chemo without trial, but in my situation (only one chromosome deleted) they can't say if I benefit from chemo or not.
I asked another oncologist regarding my concerns and he said that even if the tumor recurrs, we will be able to treat it with other drugs. And he would try it on my place.
I think I will go for a trial and see what happens.
Good luck to you and Benjamin! I am happy to see that people survive cancer! It really gives me hope.
Thank you for your answer!

Olga

CoreyandIvy
Posts: 2
Joined: Sep 2012

Howdy, My Wife Ivy had a Grande Mal in July 2011 , Biopsy in August, suspected grade 3 Glioma. Surgery Nov 4th 2011 and diagnosed grade 2 Glioma, oligoastrocytoma. She went from Dilatin to Tegratol. She remains REALY sore ribs, back kidneys still possibly from the july Grande Mal?? But reallY POSITIVE, and enjoys life. No other treatment to date. Holding off on Radiation for now, untill we hear more examples, although the docs recommend it, it grew 25% since March MRI. Anyone heard of the Photon Genie? or Maple syrop and Baking Soda?
Corey, and Ivy from BC Canada

MandKBerry
Posts: 2
Joined: Sep 2012

Hi Olga,
My husband was diagnosed with Oligoastrocytoma II (craniotomy on 7/20, 1-month MRI showed new growth they now believe is AA or GBM). He doesn't have the deletions, either, but even before the new growth his neuro-oncologist was planning to put him on Temodar 5/28 for a year. Now with the changed diagnosis he'll be getting 6 weeks of daily radiation with daily low-dose Temodar throughout, followed by the higher-dose Temodar 5/28 once radiation is done.

It's my understanding that, although the deletions indicate greater susceptibility to Temodar's effects, lacking them does NOT rule out its usefulness, particularly when combined with radiation.

Have you sought a second opinion?

BenLenBo's picture
BenLenBo
Posts: 143
Joined: Feb 2012

Hello, I just read your comment on deletions. I on the other had have both the 1p19q deletions, my treating facilities are John Hopkins, Mayo and Roger Maris Cancer Center- each has a track record for treating brain tumors. They have seen patients with both deletion live 10, 20, 30 years before recurrance or never have another recurrance. depending on treating facilities, some doctors state that deletions are not a determining factor, but reports and testing show otherwise. Now, on the other hand reading about others on this site who have only had 1 deletion or none, prognosis has not been so great. Find a facility you trust with your life. Every treating facility has their own protocol for treating brain tumors, look at what their success rates are or how many with your type of brain cancer have been treated and the outcome. Are those patients still here living productive lives. We asked our treating facilities that question, yes was their answer and even gave number of years each patient has been treated that had both deletions. Ask questions until you get the answers you want and are comfortable. Remember to keep a positive attitude and fight, fight, fight!

Wishing you all the best on your journey of beating brain cancer!

(((HUGS)))

Carol

BenLenBo's picture
BenLenBo
Posts: 143
Joined: Feb 2012

Hello, I just read your comment on deletions. I on the other had have both the 1p19q deletions, my treating facilities are John Hopkins, Mayo and Roger Maris Cancer Center- each has a track record for treating brain tumors. They have seen patients with both deletion live 10, 20, 30 years before recurrance or never have another recurrance. depending on treating facilities, some doctors state that deletions are not a determining factor, but reports and testing show otherwise. Now, on the other hand reading about others on this site who have only had 1 deletion or none, prognosis has not been so great. Find a facility you trust with your life. Every treating facility has their own protocol for treating brain tumors, look at what their success rates are or how many with your type of brain cancer have been treated and the outcome. Are those patients still here living productive lives. We asked our treating facilities that question, yes was their answer and even gave number of years each patient has been treated that had both deletions. Ask questions until you get the answers you want and are comfortable. Remember to keep a positive attitude and fight, fight, fight!

Wishing you all the best on your journey of beating brain cancer!

(((HUGS)))

Carol

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