Please remember that these discussion boards are a public forum, which means open to the public (i.e. non-CSN members) and the content can be found via internet search engines. Members are strongly advised not to share personal identifiers such as real names, email address, telephone number, street address, etc. This information can be used to identify you and link you to the content you provide. Other areas of CSN are restricted to members only and cannot be found by search engines.

Brain Cancer

Glioblastoma
Want to discus alternate treatments that are not mainstream
If anyone needs help with coping
Hi, I was diagnosed with medulloblastoma back in 2009 when I was 22 years old. With surgery, radiation, and chemo I am cancer free and I am now a 37 year old, even though I'm in a wheelchair I am a relatively healthy guy. My road as many others to recovery was not easy, but necessary. I can get out and hunt, fish, and most…
Oligodendroglioma Grade2 any 5years plus durvivors?
Hello Newly diagnosed grade 2Oligodendroglioma. Idh 1. Wait and watch approach. Idh1 mutation. Anyone on here that has had no progression for 5+ years?
Help with Transportation
My sister was just diagnosed with Brain Cancer. She is unable to drive. She has to have treatments 5 times a week for 6 weeks. She lives in Jeffersonville, In. and has to go to Norton’s Brownsboro Rd cancer facility in Louisville, Ky. You can cross the new bridge which only would take 15-20 to arrive from her house. Do you…
Newly diagnosed
I’m newly diagnosed with a brain tumor. I don’t know what to expect and the idea of surgery is terrifying to me. How do I get the neurosurgeon on my case to slow down and walk me through it? Why is my doctor so impatient with my questions? How do I ask about decision making…if/when it comes time to make those calls? I’m an…
Question for my cousin diagnosed with inoperable tumor
I hope someone can help us understand what is happening to our dear Maria. She was told she has only months to live because she has brain cancer. We are beside ourselves. My aunt doesn't even know how to say the type of tumor she has! What type of tumor makes it hard to walk, hard to talk and makes a patient lose their…
Possible Causes?
I was told they don’t know what causes astrocytoma‘s. So I’ve had to develop my own ideas about what might have caused my massive grade ii astrocytoma to start growing around 2008. Here they are… living next to orange groves sprayed with roundup working on the computer 8-16 hours a day for years speaking on the cell phone…
Emotional support for 21yr old w. upcoming occipital temporal tumor surgery
Hello, my niece has a tumor on her occipital lobe causing seizures. She is scheduled for surgery the last week this month (July 2024) at MGH Brigham. MRI today indicates tumor has grown 1cm since MRI in April. She is a very level headed and mature person, and was ready to go forward with the surgery, but the latest MRI…
Sensory Seizures after brain cancer surgery
my husband had a GBM almost kill him now 2.5 years ago. He did 7 weeks chemo/radiation, they resected 80% in the hospital the day he almost died, and 1 year of TMZ. It was on the right side of his brain only. His scans have all been normal since that terrible day thank God, but he is having these random episodes of…
Waiting for scan results
I was sent to get a brain CT w/ and w/o contrast. There were many white spots on the pictures w/o Con. But then on the contrast pictures, there were several new spots that appeared . Is there any reason other than tumors that new spots would light up with the contrast? It’s been 6 days and I’m panicking at this point…
I am a Grade 3 Anaplastic Ependymoma Survivor: Survivorship Story
Hello. I learned about this group during my most recent clinic visit. I want to connect with others who have undergone or can relate to my treatment story. In 2016 I turned 18 years old. Three weeks later I was diagnosed with a Grade 3 Anaplastic Ependymoma. I had attributed 6 months worth of daily headaches to being a…
High grade brain tumor treatment side effects
Hello. My husband had a partial resection of his brain tumor and radiation 10 years ago. It was a low grade Glioma at that time. For the past 10 years we have just monitored with MRI's. Minor growth until recently. Now it is growing fast and presents as either anaplastic astrocytoma or a glioblastoma. The doctor said it…
Looking for help
My daughter and 4-year-old grandson are in Utah's Children's Hospital and I am trying to find some help for her. My 4-year-old grandson named Zane has Pinoblastoma. (sorry if I spelled it wrong.) He has just gone for his 3 surgery already. He was supposed to come home to Reno, NV. But needed another surgery. I am grandma…
42yr old sister diagnosed with Glioma
My sister was diagnosed with a glioma a few weeks ago. She had brain surgery within 2 days and all was removed. Her prognosis, as you know, is 12-18 months. I am up and I am down. Life is more precious than it even was before. I can’t fix this for her. I am so sad I burst out crying without even knowing I was going to…. I…
Glioblastoma with changing behavior
Hi all. My mother in law was diagnosed with glioblastoma back in November 2022. A few months back she started getting really confused and would call myself if her son anywhere between 30-70 times in a 8-hour period, as if she just couldn’t remember calling and speaking with us. Every week thereafter things were only…
Juvenile Pilocytic Astrocytoma Recurrence - Starting Chemo
Hello - My 3 year old grandson was recently diagnosed with a JPA in December 2018. The surgeon was able to resect what she felt was 100% of the tumor. 10 months later, the MRI show a recurrence of the tumor and his oncologist wants to immediately put him on a chemo regimen of Carboplatin and Vincristine. We were told that…
Glioblastoma grade4
hi, I have just been reading your stories about alternative therapies. I AM a 58 year old female after a week of losing ability to use my r,hand and then arm, an MRI was done and on 11/28/16, an MRI showed a tumor about the size of a small orange, 1 week later it was resected with the surgeon saying. He got 99% of it. 2…
Glioblastoma
Experiences with glioblastoma II on radiation and temodar following surgery
Total shutdown after being pulled from steroids
Hi, my loved one was diagnosed with glioblastoma, they had surgery, went through the 6 weeks of radiation/chemo combo, and is now taking infusion once a month and chemo 5 days a month every month for six months (she is on month 2 now). This entire time she has been on steroids and recently we pulled her off, but she…
Rate pineal tumor
7 yrs of fighting and watching my sweet son have seizures since age 16 and other awful symptoms. The tumor initially being missed and told he has epilepsy which I never believed! The fight to find a nuerosurgeon capable of resecting this mass has been tremendous, now very short notice after consulting with his nuerosurgeon…
feeling helpless and feeling my marriage is falling apart
My husband was diagnosed 10 years ago with an astrocytoma stage 4. they couldnt operate because of where it was. they radiated and he has been in remission up until 2 months ago. He had surgery 3 weeks ago and what a struggle that has been. He is not the same man that he used to be. He is so bitter and angry and directs it…
acoustic neuroma
i was recently diagnosed with an acoustic neuroma, I have no hearing loss or tinittus, no facial paralysis, only slight vertigo. my tumor is 1.8 cm long, so not large yet, but it's touching the brain stem already. What are the risks connected with the tumor touching the brain stem? Does anyone know what the chances are of…
Adult w/ ependymoma
I was diagnosed at age 51 with a brain tumor in 2019 and had it removed in October of 2022. It never really gave me any major problems until about 12 months before surgery. I began having minor dizzy spells and double vision, only when I looked left. My surgeon removed all of it. I had 6 weeks of radiation. My issues now…
Burning out my support system
After undergoing chemo and radiation in October of last year, my monthly chemo cycles go for another year through Nov '23. (Grade II Inoperable Brain Stem Astrocytoma.) I have good days and bad days, and feel as if I am burning out my support system (friends and husband) on my bad days. I know this is a "new normal". I…
Astrocytoma Grade III-Survivor
If any one needs help please let me know, I went through brain cancer and have lived. My calling is to help others survive also. Jose
Radiation Recovery
On 9/8/22 I was diagnosed with low-grade glioma of the brainstem. I underwent surgery on 8/23. Resection was not possible. I completed 6-weeks of radiation treatment on November 11. I am seeking to understand what recovery looks like. I am still quite sick. Mornings are typically best, but by 1:00 pm I am 'sick'. It's…
Grade 3 papillary tumor of the pineal region
Hello, I’m new here. this is my first post so I will tell my story, I’m 27 and was diagnosed with a brain tumor in November 2022. In December I had a partial resection because of where the tumors are the doctor couldn’t safely remove because the main artery in my brain that Carrie’s blood to the brain is wrapped around the…
Glioblastoma Patient in Need of Temozolodine
Hi everyone, my father (96 years old) was diagnosed with Glioblastoma about three weeks ago. They cannot remove the tumors so the only option is radiation and chemo (Temozolodine/ temodal), which we are would slow the growth and increase survival. Aside from the physical and psychological pain that this has caused our…
Lightening Sickness and Brain Tumor Survival Story
I want to share part of my brain tumor survival story. I've always gotten sick with lightening, then a few years ago I got blasted with really strong electromagnetic fields while working on a grounding mat and received brain tumors; I have gotten concussions when I was a child, damaging my brain. Since then I started…
glioblastoma treatment
What was your treatment and what do you know of the side effects , results, experience patient or caregiver. please state patient age as I want to research this for my 75 yo mother.

Brain Cancer

Discussion List

Discussion Boards