Oligodendroglioma My story

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Oligodendroglioma My story

by Chloe1111 on Thu Aug 29, 2019 02:18 AM

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In 1998 I was diagnosed with a trumor. I was given a bunch of medication and  ultimately moved from the hospital. Being young I thought nothing of it since my symptoms were tolerable. In 2009 I found myself on the bathroom floor.I apparently passed out. I went to the hospital and they said I had a seizure. Never in my 41 years of life have I ever had a seizure. Well this started my cycle of events. I was diagnosed with a grade 2 Oligodendroglioma. It was watched for several years through MRI yearly. It was diagnosed by a biopsy. Due to the locating in the left frontal lobe on the motor strip surgery was not an option. I did chemo for 2.5 years and it showed stable so i was able to stop for 1.5years. it has not become agressive again and I am back on chemo. I have far outlived the expectations and I won't let this beat me. Please share your story and let me know I am not alone.

RE: Oligodendroglioma My story

by ottoh on Mon Sep 02, 2019 06:50 PM

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Hi Chloe, my wife had stage 4 glioblastoma and surgery in 2015. It came back and 6 months later had it resected. Spent about a year in Houston at MD Anderson in a clinical trial where they geniticlly modified her T-cells to fight the cancer. We had her on CBD's and THC through the trial and have kept using them ever since. She has had clean MRI's every 3 months ever since. She is doing great but has memory loss and some bone issues from the chemo and radiation. She lives a normal life except she cannot work as she has a short attension span and trouble with numbers. We are looking forward to enjoying our life together for a long time! I would do a little research on the bennifits of CBD and THC. I'm a firm believer in them. Good luck and long life! Aloha

RE: Oligodendroglioma My story

by vwxyz on Sat May 02, 2020 01:33 AM

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Chloe1111, I am thrilled you have lived beyond expectations. You are truly blessed. Especially when they caught it earlier than most. My son just graduated from college. During his studies, the 3 different opinions we recieved agreed it was nothing. We went to major hospitals and they just looked at the records from his primary and an old, old, should have retired decades ago, neurologist. He no longer wanted to work, so he passed on the records to Mass General. He neglected to tell us about the small tiny grey area in my sons cerebellum. By the time the Emergency Room demanded someone take notice for us, we ended up at Boston Beth Isreal Deaconess for emergency surgery. I wished we had gone to Brigham and Womens hospital because I found out later the Head of Brain Surgery Department trained all the Mass general brain surgeons. The anaplastic Oligodendronglioma is slower growing than GBM. It is considered a baby GBM. To catch it when it is small and a lower stage is best. My son's brain cancer was stage 4. Because it was Oligodendroglioma slow growing, it gave my son more time. Because it was Anaplastic, it was aggressive and non-relenting. But nothing could save his life. The doctors and many second opinions misdiagnosed it as something non-cancerous. It was too late, no matter what we did. The HYPPHA was conveniently misplaced and disapeared 4 times to protect the primary Doctor's and local "old" neurologist misdiagnosis. 

Temodar that did not work, I was told. The radiation was too much and eventually simmered its way through to the right side of his cerebellum from the left side.  He still understood what was happening to him right up to the end. But what was happening to him created delayed speech and the new young nurses did not have the tolerance to want to deal with it. He was strongly physically abused at the end by a nurse that did not see me in the dark corner of the room. I did not allow her back in the room, but when I came back from down stairs after my sons procedure, she was there with my son in the room and he was dead. The Emergency team filled the room and could not revive him. The doctors that did the procedure, said he revived well, talking, and conscious and doing well. They could not understand what happened. I amleft with not being able to save him from this nurse from hell. Our plans were to go back home and he even picked which outfit he wanted to wear to go home to his beautiful apartment.  All I could think about was "not like this.. dear God not like this." 

He lived with this for 4 and 2/3 years. This time went by so fast,like yesterday. I am greatful for the time we were able to spend time as a family and vacation during this valuable time. He even was able to drive his new car he received for his college graduation. Just locally. And on vacation down a deserted road. I did everything I could to respect his age, being a man, and respecting his Faith in God. I know he is with the Lord and I know someday in the Lords time, we will be together as a family again. I miss him greatly. There are times it hits me like a ton of bricks. 

My advice to you is to talk with your doctor/neuro-oncologist about a stomach tube when you are still strong enough to survive the operation. It will definitely give you an edge for survival when its needed.  Don't wait. Get many different opinions. The neuro-oncologists and doctors are dealing with alot of brain cancer patients. I am sure others on this message blog has other advice to you and I do not know if this procedure is for you. The doctors waited too long  ignoring ourquestions about this procedure to be done while he was strong.  

One of our 4 second opinions said "it doesn't take a rocket scientist to know what was going on and what to do about it."  It was St Elizabeths Hospital in Brighton, MA. We eneded up broken hearted. Some of the best treatments are from smaller hospitals in ou\r area or from Brigham and Womens who know what they are doing.  My time is driving people with cancer diagnosis to and from their hospital operations and going back to college to upgrade my skills. It helps keep my head above what happened to my son. No way or where will I ever treat a patient like my son was treated. I think of myself as going to be the Erin Brockovich of the medical field after being hired, without the cleavage exposure. lol. i wish you the best of the best  care and wishes.  JLB. 

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