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Medullablastoma survival rates
Hi, I've just joined and would like to connect with other medullablastoma survivors. I am 33 years old and was diagnosed with a grade IV medullablastoma when I was 31. I had surgery which removed what the naked eye could see of the tumour. I had chemo before, during and after brain and spinal radiation. Overall I'm doing…
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lost a mother ......
Hi its been awhile since i visited this site. I found this site when my mother was diagnosed with lung cancer that spread to her brain, last January 2012. Each day was different, there were good but mostly bad days for her. Last May 2012, she was admitted to the hospital due to severe weakness. Since then she was always…
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Anyone with this: Brain stem, strain on voice, swallowing issues...
My wife (oligoastrcytoma) had avastin and CPT-11 treatments) along with temodar for several weeks until they had to be halted due to an infection from an incision from a previous biopsy. In the last few weeks, her voice has grown really week and I've noticed she gets hiccups and has some trouble swallowing mostly liquids,…
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Frustrations -update on my sister dx anaplastic astrocytoma
Dear all, I did take a break from posting just because I though I could tame my addiction regarding this website. But I follow your posts closely. each one of you is dear to my heart. I think of you every day whether or not your love one is still alive or not. I have been desperately searching for a decent immunotherapy…
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How are all the Oligodendroglioma Survivors doing on this site?
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…
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Oli Grade III
Just had another MRI, clean bill of health for another 3 months, but actually both Oncologist, said that it could be 10, 20 or even 30 years before recurrance. I am totally of all medication, have no side effects, working full time, and back to normal. Was told, that I had excellent surgeons, treatment plan and great care,…
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Need help regarding whole brain radiation decision
I am new to this board, I stared on the kidney cancer board in late Feb, when my mother was diagnosed with stage IV kidney cancer. She has been following treatment guidelines for the kidney cancer and mets in lungs, spine and femur; but after my repeated concerns about her being confused they did an MRI and found lots of…
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confused
Ok. My best friend was working with me about a week ago. She punched out from her shift, started to say she felt like she was gonna pass out. So the longer she sat down the worse she became. Eventually my boss had to drive her home because she was confused and could barely walk. She would not go to emergensy room.…
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Brain Shunt treated dementia, gait changes and incontinence!
Hi All, I want to post some good news! Due to extensive chemotherapies, Whole Brain Radiation Therapy and then Autologous Stem Cell Transplant with High Dose Chemotherapy, which has left hub free of disease since May 2010, he was left with dementia, almost inability to walk and incontinence which left me changing the…
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Temozolomide help
Hello everyone.. My brother is Dx with GBM IV on December 2010 and is currently taking temozolomide. He lives in a country where cancer is unavailable so we had sent him to Thailand to get his initial chemo/radiation. He is now back home and responding well to his chemo. However, we have been buying the meds online from…
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Fying in commercial jet liners
I have had GMB4 which has been de bulked last November 2011. Radio hrapy completed . in btween chemo treatments What is the rule regarding flying. Need to fly for around 6-7 hours for a holiday .. Also
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life after brain surgery
was wondering if anyone has the same symptoms i have? i was diagnosed with a brain tumor back in jan. of 09. i dont remember the name but i do remember the doctor telling me that it is a rare tumor and very aggressive. needless to say i had the tumor removed just above my right ear.since then i have had a list of problems,…
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Anaplastic Astrocytoma Grade III
I am new to this network as my miseries are new. April 22nd my wife (49 otherwise healthy) had a seizure and then it has been one roller-coaster ride and we are yet to come to the ascent. Initial diagnosis was cerebral hemorrhage then stroke, benign tumor and finally biopsy confirmed it as AAC-grade III one in left frontal…
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HBOT for Radiation-induced Necrosis
HBO Therapy For Radiation-induced Necrosis Radiation-induced necrosis has been estimated to occur in 20% to 25% of patients for cancerous tumors in the brain. Some studies say it can develop in at least 40% of patients irradiated for tumors following large volume or whole brain radiation and possibly 3% to 9% of patients…
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My dad has Gliblastoma Multiforme
My dad who is 67 years old and otherwise healthy, started complaining of headaches and 3 days later he passed out in the yard, after getting him to the hosptial it was found that he had a mass on the brain, after the initial biopsy we were told that he has Gilblastoma Multiforme, I am schocked and confused. the doctors are…
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cramp
I keep getting cramp in my legs, and hands can anyone suggest a cure? or relief.
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MUTIPLE CYSTIC FOCI IN THE CLIVUS
I had an MRI post an auto accident and they found multiple cystic foci in the clivus and recommended dedicated MRI of the brain with and without contrast and gave differential diagnostics including chordoma. I am 32 years old and freaked out, is this common for males my age? could this be just anything else? I go in…
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Update
Once again I don't know where to start. It's 1:30 am and I'm one-finger typing on my iPhone in the dark in my recliner in David's room. So bone-weary and exhausted. We have been out of the hospital one week as of today. David had developed another abscess in a very sensitive place---between his front and his butt. He also…
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Working through avastin
Hi All, Anyone have experience working through avastin? A little background: Brainstem glioma dx 2009 6 weeks temodar and rad, followed by 3 mos temodar had a very flexible schedule then. But have managed to keep a pretty rigorous work schedule (75 hours a week or so and oft 24 hours at a stretch) since then, and while it…
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Brain Tumour Concerns
I am really concerned at how I have been treated since my diagnosis of a ‘low grade’ glioma. I had an MRI in January to investigate hearing loss, which incidentally found what they think is a ‘low grade’ glioma. I was told by an ENT consultant that I had a large mass on the ‘left side’ of my brain (glioma or anything about…
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Ependymoma
At 35 yrs old ( 39 now ) I was diagnosed with an ependymoma brain tumor (benign), and several spinal tumors from l2 through s1. The spinal tumors were removed, although the surgery was long and complicated, because the tumors were wrapped around the nerve sheathes. My symptoms existed for appxtly 2 yrs prior to surgery.…
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A A grade 3
I have an astrocytoma in the left frontal lobe again for the 3rd time. Has anyone gone through this and survived?
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Oligoastrocytoma Grade III
Hello everyone, I am new to this site and new to brain tumor. I found out there was a "spot" in my brain (left frontal lobe) after a CT scan in Sept 09. They thought that it was a stroke though and it wasn't until an MRI 2 months later that they discovered it was infact a tumor. I am 28 so I knew it wasn't a stoke. I had…
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Back in the hospital
We are back in the hospital---Salem Hospital this time, not OHSU. I'm breaking in a new set of nurses and doctors haha. David had an MRI on Thursday. He's not doing very good..... It takes everything I have to get him in and out of a car and to and from an appointment. I have a wheelchair but the problem is the car.…
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Cyber Knife robotic therapy
Has anyone experienced the cyber-knife robotic radiation? I have GBM 4 and I was taking Avastin and Temodar. Despite the treatments, my tumor continued to grow. It has doubled in size of a small marble to a large marble. So all treatments have been stopped. I am not able to have another surgery due to complications that I…
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My 6 year old was DX with a Pilomyxoid Astrocytoma...
Hi, My Name is Tracie and I have a 6 year old little girl that was recently diagnosed with a pilomyxoid astrocytoma. They are saying its spread to her spine and she is now doing chemo and will have another surgery after her first cycle. I know that medical advances to this point are amazing, does anyone have any experience…
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My mother- Anaplastic astrocytoma
Hello to anyone who reads this. This may end up being long, so i apologize in advance. Around this same time in 2004, my mother found out she had a brain tumor. Of all the ways to find out, it all started during an eye exam. She was having severe headaches and made an appointment to hae her eyes checked to see if that…
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Medulloblastoma-PostOp
I'm new to this so here it goes...In 1985 I was diagnosed with a malignant brain tumor (Medulloblastoma) at 15yoa. Surgery (@ Shands Hospital Gainesville) was successful in removing 99% of the the tumor and radiation therapy took care of the rest. In addition to brain radiation, my spine was radiated as well as this type…
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GBM NON EXTRACTION.
MORNING : I was diagnosed with stage 4 GBM last aug , was told that extraction was my best chance ,, but i would loose a good part of my eyesight , as a carpenter i need to see my tools and hands , so i opted for a biopsy , then full brain radiation in case there were small tumors that couldn't be seen yet then gamma knife…
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Anyone with tumor/vision issues due to pressure?
What a day! I had a 2 hour check up with the eye Dr. today. My NO looked at MRI Wed and suggested I see an eye Dr. as soon as I could. We haven't been able to pinpoint the issue yet, but we think I am having pressure issues. Severe headaches, jaw pressure, loss of feeling in affected side of face, and some vision issues. I…