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Oligodendroglioma grade 2
Hi, my name is Ashley and I am from Portland Oregon. I never thought I would have the courage to talk to others about what I am going through. It has been almost 2 years since I had a seizure then surgery where they took out about 98% (or so) of my Oligodendroglioma grade 2 tumor. It was in my left temporal lobe and the…
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Oligodendroglioma Grade 3 Healing Journey
Hey you all, What a beautiful website. I just wanted to stop by and post to share with you all a bit about my story and see what others have gone through in their healing. Its amazing how we are all connected in this world. In October of 2013 I was in a scooter accident and rushed to the ER. They found a broken shoulder…
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Grade 2 Oglio; to operate or not to operate? and where?
My brother-in-law has recently been diagnosed with a grade 2 ogliodendroglioma. One neurosurgeon has said he should have an operation and that he could remove 80-90% of it and then do radiation and? chemo after. Another surgeon has said he would suggest not doing surgery but doing radiation or chemo (or at least he is…
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Anaplastic Astrocytoma Grade 3 Brain Stem
My husband has an AA3 in not an ideal location(if there is one). I waa looking for some positive survival stories. A lot of the posts on these discussion boards go on for a long time, but we never hear how everyone is doing. I guess I am looking for hope, but I am also looking to manage my expectations. I have a 5, 8 and…
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metastasis from head and neck.
Hi everyone, Well I thought I was doing well. Chemoradiation for head and neck scc completed3/8/12, pet/ct scan november revealed a lesion in left lower lobe of lung, resulting in lobectomy. pet/ct nov 2013 showed clear!! So I was over the moon. However its all gone wrong. GP referrred me to hospital for ct brain because…
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pxa
Hi, anyone out there have or heard of dx Anaplastic PXA (Pleomorphic Xanthoastrocytoma). My husband was diagnosed 7/01 (original dx was just PXA) right temporal lobe. Surgery followed by monitoring w/MRI. Recurrence 10/01, sugery showed it more aggressive, so dx "anaplastic" PXA. Had 4 wks hyprefractionated rad with…
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Glioblastoma Multiforme, WHO grade IV
My Father, 62 years old has beendetected with Glioblastoma Multiforme, WHO grade IV. ( Brain Cancer) He has been operated on 11/02/2014 and 90 % of the tumor has been removed, for the remaining 10 % we would be doing Radio and chemo both at the same time. Through the net and meeting docters I have come to know that it is a…
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new here...possible brain cancer
hello I am from the head and neck cancer group. I was told today that I have two areas in left side of my brain according to a CT scan that are highly suspicious to be cancer. I am a year and a half survivor of tongue cancer. We are now facing PET scan and MRI this week. I have anxiety disorder with panic attacks so this…
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33 year old female patient from Greece
Dear all, the time of my life to find someone to share the rest of it came last August. Then in the deep blue sea and sky of the Greek Island of Santorini i proposed to my girlfriend to be my wife. I proposed to her on a big rock emerging out of the beautiful sea during the famous sunrise of Santorini. She said yes with…
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AT/RT
I hope this post with encourage and give hope to families who's children have AT/RT. Our daughter Sophie was diagnosed with AT/RT at 3 &1/2. We were a normal family living normal lives on the Gold Coast in Queensland Australia when our daughter was taken to Hospital on the 15th August 2012. She became ill over the weekend…
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Planned CSN Outage Tonight
Dear Users, CSN will be down for routine maintenance tonight from around midnight to 3:00 AM Eastern Time. We apologize for any inconvenience. The site will be up and running as quickly as possible. Thank you for all you do for CSN! CSN_Nick
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Avastin
Please help. We just came home from the doctor and was told the only choice for my daughter 31yr is Avastin. No other medicine or chemo because she also has Lupus. On May 6th, she had her second Gamma Knife Surgery. Which we thought one tumor grew,but that day found out they would radiate 3 new tumors. Is it a good choice.…
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Glioblastoma Multiforme
I was diagnosed on Febuary 28th with GBM. I had a total resection of the tumor on March 5th 2013. I took 30 radiation treatments along with 140 mg of Temodar. Had a two week break and started the 5 days on 23 days off cycles of Temodar at 300 mg. It has been 11 months now and not the first sign of my tumor returning. Is…
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gbm hope!!
my father is now six months into his journey with a gbm stage four that was determined inoperable. on nov. 1st we went to get his mri and were prepared for the worst because he has become very symptomatic to the treatment of temador, avastin, lithium, and the various other drugs. we assumed the symptoms were from the tumor…
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Euphoria
Okay, so about 8 weeks ago I found out I have a cancer that will kill me. Not sure when, but it will do it. Could be a yaer, could be 20. So. Why do I feel happy? I swear, the first emotion I had was nearly euphoric. That has since tempered, but still, what the heck? Anyone else feel that liberating feeling? Or am I just a…
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Tumor in the Brain - Meningeal Sarcoma
I'm looking for someone that has been diagnosed with Meningeal sarcome or someone that has experience with it. My son was diagnosed 10/2011. He had tumor removed then; two short months later it came back; another surgery (left frontal lobe) reoccurred in the exact same place, started proton beam radiation in Jan 2012,…
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Caregivers who have dealt with GBM
My sister-in-law is going through GBM and I am a TNBC survivor. I am with my brother and my sister-in-law almost everyday staying by their sides. I am trying to deal with being in that place between acceptance and denial. Its terrible. I wonder if there is anyone out there that can give me some idea what to expect going…
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headaches sending me back to the NO
I called my NO yesterday because I've been having worsening headaches for the last month and now they are nearly constant. My next MRI was supposed to be in April but she is having me come in next Thursday to have an MRI and see her. I'm a little nervous. She told me intitially when I called yesterday that she is pretty…
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Prognostic significance of extremely low platelets?
My husband was diagnosed with AOA III in September. He had surgery to remove an 8cm tumor on his rt. frontal lobe, followed by 6 weeks of RT and tmz. His last treatment is today (yay!). However, his platelets dropped dramatically, from 329k on 10/15, to 52k on 11/1, and 30k on 11/4. His NO wants to do a PET scan to…
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Help Please
Hi everyone i am new to this site and looking for any help i can get. 4 years ago i was admitted to hospital with tingling in my hands and legs and complained of a poor memory and seizures, they then found a 2.5cm lesion in my left frontal lobe. The neurologist classified it as a low grade glioma and suggested its been…
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Gliadel Wafer, infused with carmustine
First of all...Thanx to all !! I have stage IV Non Small Cell Lung Cancer, But I"ve had Brain Mets lately. I know you at least... and if you have family involved, they are going throught the crap too . Long story short, the doc's want to use Gliadel Wafers on brain mets, infused with Carmustine chemo... after brain surgery…
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inoperable glioblastoma, having palliative radiotherapy
My mum has recently been diagnosed with glioblastoma, inoperable since it is in the corpus callosum. She's been offered palliative radiotherapy, 36/10 ie 10 days. Anyone here have experience of how effective radiotherapy will be at slowing growth? She's not having any chemo, and is coping amazingly with radiotherapy. Dex…
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Information please!
I have a friend who is in the hospital after surgery for brain cancer. They were not able to get the entire tumor And are now doing chemo/radiation. I dont know which actual cancer she has. However: she is soo confused, can't walk, and remembers some but not others. And so anxious. I don't know the stage, the cancer was…
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Glioblastoma multiforme grade IV
My husband was diagnosed with GBM IV on Sept. 11 of 2013. Had the surgery Sept. 17. They removed 80 to 90 percent. Radiation for six weeks along wth Temador. first MRI was done a week after completion of radiation. Showed growth but they said could just be swelling. in a clinical trial and just finished his first five days…
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CSN study
Please excuse the long post. A number of members have posed questions on the discussion boards or emailed me for more information about the CSN study that has been underway since November 2013. I thought it might be helpful to post the most common questions and my answers. What is the CSN survey? What is its purpose? The…
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Avastin being used for Brain Tumor
Does anyone have any experience with the drug Avastin being used for shrinking brain tumors? What about all the side effect?
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oligodendroglioma/ surgery not an option
31 year old male with the fun brain tumor :) I am took temodar for 9 months, even though I had both chromosomal depletions, it did nothing. I stopped. I refused radiation, They can not operate because of the location. I am on keppra for antiseizure medication. Anyone have any success stories? I was diagnosed about a year…
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Son 23 diagnosed with Grade IV Glioblastoma; need some advice
Since our son was diagnosed on 12/19/13 we have been trying to read up on as much info as possible regarding treatment etc. The surgery to removed as much of the tumor as possible and we have been talking with the oncology drs re: chemo and radiation, and possible drug trial in Seattle. Our son is still at Prov and will be…
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Hello, I'm new. AA3
Hello, my name is Josh. But, I prefer the nick name Cando. I'm a costumer who likes going to conventions and I am 35 years old. Three weeks ago, I had finished my first week of work and came into Reno to stay at my apartment with my father (We share the apartment) And we had just moved in and was still moving things from…
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Dizziness problem
I had dizziness problem 3 years ago. No problem being found through brain/neck MRI/MRA. After using CPAP, the problem went away. Now, it reoccurred and CPAP couldn't solve it. I have been told that 90% of the dizziness problem shall be related to brain/ear. Does anyone know a good specialist for inner ear or brain…