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

Headaches from tumor
Hello. My husband was diagnosed 3 years ago at age 28 with a oligoastrocytoma WHO grade II. He had a 13cm tumor in the right temporal lobe of his brain. About 70% was removed at Duke University. We now go to MD Anderson. He has aura seizures at least every few days. He has headaches everyday from the time he wakes up until…
Fainting when coughing after PCNSL
Hi, I have had PCNSL (primary central nervous system lymphoma) and am now NED (no evidence of disease, "cured"). I have bad and long colds with severe coughing and fainting tendences. Sometimes when I cough I actually do faint and fall. So far, I have been sitting on my bed when fainting, so the fall has not been so big,…
oligoastrocytoma Grade II survivor 12 years
Hello everyone I'm new to this site but I wish I found it sooner. My name is Scott I was diagnosed with a brain tumor in fall on 1998 it was a cancerous oligoastrocytoma grade 2 I only warning was a grand mall seizure in my sleep and I had waken up with blood on my shirt. At the time I was only 23 so I didn't have a clue…
Private Message Spam
Hello everyone, Thank you to those who've alerted us to the spamming from earlier today, and we sincerely apologize for the inconvenience. While we have security measures in place, we can't prevent all spam. We are currently working on measures to try and block this. If you received a message, please do not respond or…
First MRI since chemo/radiation- share good news
Hi everyone. Just wanted to share some good news. I was diagnosed with AAIII in November 2014. I underwent surgery and recently completed radiation/chemo. I had MRI yesterday. Everything looks good! My oncologist would like to continue treating this aggressively and start chemo in March. Like most of us, I will be treated…
brain tumors
Ok, so my cousin just found out he has a brain tumor and went in after the swelling went down and had surgery. He ended up finding out that he has a very rare type of cancer...especially for adults. It is Teratoid/Rhabdoid(at/rt). It is usually found in babies and toddlers. Well, he in 34 years old and I have tried to…
GBM Grade 4
My mother has GBM grade 4. She had surgery in March. Did radiation with temadar. Now doing higher doses of temadar 5 days on 3 weeks off. MY mother is 80 years old. At the end of February she was completely independent. Driving, doing volunteer work, cooking, going out with family and friends. Now she has lost all…
CNS Lymphoma newly diagnosis-ed need only 27, need to know your treatments
Hi, Posting for another, just diagnosis-ed with CNS Lymphoma, with comprised immune system. Where are the specialist, where are you being treated. Anyone use Penn, what did you think of the doctors ? This rare cancer, is going to be a rollacoaster, any insites would be appreciated. Thanks Jay
What's Novocure? Does it work?
Are Optune and Novocure the same thing? Has anyone here tried it? It seems pretty science fiction to me, but if it works I'm game.
Laser Ablation Brain Surgery
Has anyone had laser ablation surgery for brain tumor that spread from the lung?
Augmenting Cancer Therapy with Diet - An Oncologist's View
Dr Champ is an Oncologist and Assistant Professor at the University of Pittsburgh Cancer Institute. Here is a link to a recent talk in which he discusses his views on diet for cancer patients and how he came to these views. He also discusses the mechanisms by which diet can fuel the growth of tumors or slow growth. I urge…
anaplastic astrocytoma grade 3
Hey, I am SGT Gene Radcliffe U.S. Army. About two months ago I started having sieziers that would knock me out for multiple days, after this started I was sent to Tripler AMC for diagnosis. It turns out I have a anaplastic astrocytoma grade 3 in my left temporal lobe, they docs were able to surgecly remove the majority of…
Nerve Damage from Temodar
Ive been taking Temodar since June 2014. Currently on 360mg on the 28 day cycle. Ive just recently started to experience a great deal of nerve pain in my left foot starting in my toes and going halfway through to my heel. im curious as to how long this will last or if the pain will spread? Thank You
Are there any Gliosarcoma survivors??
I've been looking everywhere for someone who has lived 5 years and I can't find one, do you know of one??
Discussion Board and Chat Spam
Hello everyone, Thank you to those who've alerted us to the spamming from earlier today and we sincerely apologize for the inconvenience. While we have security measures in place, we can't prevent all spam. We are currently working on measures to try and block this kind of discussion board and chat spamming. If you…
long term gbm survivors????
Anyone here that has a glio aka gbm and has been living far longer than the 15 month average? just curious because i have a glio and was told 12 to 14 months is my life expectancy but i am doing much better than was expected. just like to know there are others who have lived far past the average rate of survival.
New on this forum
Hi: I usually am on the head and neck cancer forum as that was what my husband's cancer was (throat) which returned with avengence and he passed away in Aug. of 2010. However, I still keep up with the folks on the H&N forum as they were so good and comforting all the way thru and hopefully I can give a little bit back to…
Etoposide
Anone have experience with Etoposide, pill form or a second bout of radiation? My husband is fighting an Anaplastic Oligodendroglioma Grade 3. The doctor's thought there was something on the MRI 2 months ago and suggested more radiation.After reviewing with the tumor board, it was determined that they weren't 100% sure it…
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…
Gamma Knife while on Avastin
My daughter has been told she needs Gamma Knife for an unusual spot found in the middle of her brain. She is currently on Avastin for the tumors that are in her left frontal lobe. The Avastin is working for that area, but not for the new one. My question is has anyone gotten Gamma Knife while on Avastin? If you have please…
Can cramp be caused by temodar?
I have cramp in my hands, feet, and legs, normally about one day a week, and it can be quite painful. This cramp can perhaps be due to age (I am 70). I take temodar 4 days every month to prevent a relapse of CNS (brain) lymphoma. It seems that cramp is more frequent when I take temodar. I have studied the documentation of…
glioblastoma Grade 4
Hi all, my 74 year old mother, a month ago had a sudden seizure, and when in hospital discovered she had a brain tumor. They operated and told us it is a Glioblastoma Grade 4. She decided to have the radiation and chemo, and we all are supporting her in her journey. My concern, which none of the doctors seem to want to…
Another great MRI on Valcyte - Valganciclivor
GREAT results from my partner Steve's latest MRI at MD Anderson. Impression from radiology: Continued improvement noted in hyperintensity. The resection cavity continues to collapse with no evidence of progressive disease. Steve continues to tolerate Valcyte well and has not experienced any side-effects. Valcyte is an FDA…
Wierd Smell & Short Term Memory Loss esthesioneuroblastoma
My husband is 76 years old and was operated on February, 2014, for an esthesioneuroblastoma. He had both the cranial and nasal approach. Margins were all clear, thankfully. Doctors recommended no chemo or radiation, but follow-up scans every 6 months for 2 years. He irrigates twice a day. While it is a minor problem in…
Oligodendroglioma Grade II
First, I want to thank everyone who posts on this site. I have learned so much about my tumor as well as other type of gliomas and appreciate the sharing of experiences. I had my surgery so quickly after being diagnosed I did not have the energy to research or join this network. I would love to hear from others who have…
Private Message Spam
Hello everyone, Thank you to those who've alerted us to the PM spamming from earlier today. While we have security measures in place, we can't prevent all spam. We are currently working on measures to try and block this kind of private message spamming. If you received a message from rita44556 prompting you for money,…
New cns lymphoma growth
Hi. Can't believe we are here again. 4 yrs of remission last mri. 8/1 was cleanfriday 9/5 showed new growth. I need some help making a plan. I don't know if more treatment is available or wise
After Radiation lip
It's been a year since I finished radiation on my brain. I've had this lump on my lip since then. I had thrush and all that stuff durring radiation, but this lump hasn't gone away. My Dentist said that I should have my Oncologist look at it. I haven't yet, but was wondering if anyone else has this. It's really the least…
Problems with Temodar - interrupt treatment?
I had primary CNS lymphoma in 2012. I got cortisone and then three rounds of four day treatments with Methotrexate, antibodies and other stuff. The tumour vanished. Then my stem cells were collected, I got high dose chemo according to the BEAM scheme and then I got an autologous stem cell transplant. Now I am on 250 mg…
End Stage GBM Stage 4
My Mom is end stage GBM Stage 4 with severe cognitive impairment. Pastoral and hospice counseling offers no solace dealing with her impending death as she simply isn't rational enough to retain the information. I've been thinking of telling her that everything will be okay and she isn't dying but I'm fearful of doing so.…

Brain Cancer

Discussion List

Discussion Boards