-
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…
-
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…
-
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?
-
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…
-
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…
-
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…
-
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…
-
Brain Cancer Survivor..??? 21 years old
I'm feeling a little at lost and would like to explain my scenario to those who also understand what im going through. 7 years ago I experienced consistent headaches. The dotor suggested a CT. Nothing so we followed up with an MRI and a referral to a neurosurgeon. His opinion was its a "smudge" lets monitor it for changes.…
-
Ultrasound Surgery
Good morning, My wife suffers from a grade II astrocytoma in the left temporal lobe. The tumor was resected in 2010 and returned in 2012. Radiation therapy was completed in February 2013 and the tumor appears to be stable but is still quite large. I recently viewed a video from TedMed which featured Yoav Medan explaining a…
-
headaches
Hello everyone my name is Amy. I was dx in october with a mass in the frontal lobe. I had a crainiotomy 3 weeks ago, I know its a high grade glioma, will hopefully get the final results tomorrow. I was weaned of the dex last monday was the last time I took it. Before I took maybe 1 500mg tylenol a day for the HA, now im…
-
Grade 3 or 4 GMB - 36 YO
Hi. I'm completely new to all of this and perhaps it's elementary to post so early on this board. However, my 36 year old husband just underwent a craniotomy biopsy (probably not even the right terminology) and the doctors are giving me preliminary results of a Grade 3/4 GMB...based on what they saw...even before pathology…
-
Husband diagnosed with Anaplastic oligoastrocytoma grade III, scared and confused....
My husband was recently diagnosed with Anaplastic oligoastrocytoma grade III just a little over a month ago, he had surgery on January 30th and they were able to remove about 95% of the tumore and when he was being discharged we were given some paperwork with all these words and numbers on it, and it was still over 2…
-
STAGE 3 Oligodendroglioma MY son diagnosed March 2011 Any discussion would be appreciated...Thank Yo
MY son was diagnosed last march 2012 with A cancerous Stage 3 brain Tumor, 3 days after the operated on him. They than put him on chemotherepy for 4 months,this seemed to do nothing in August of 2012 they operated again on him, this time the operation took longer and he almost hemeraged and took alot more for him to…
-
Temodar - How Long Too long & tips on dealing with Side effects.
I have been on Temodar for almost three years now 5x400mg 5/28 days - Concurrent with Novocure Take a single tablet of zofran to manage nausea after the first year. Blood counts no problem. Sleep pattern, fatique 7 Brain fog, constipation, i think are getting worse extending beyond the 5 days of taking the pills to 7 days.…
-
Ogliodendroglioma
Hey, my name is Stewart. I had a stage II ogliodendroglioma that was about 4 cm diameter. During surgery, the neuro believes to have removed all of the tumor. The CT scans have come back clean. I'm still waiting on second and third opinions from other pathology reports to know if radiation will be needed. I've heard many…
-
My mom found out yesterday
Hi everyone. I'm brand new as of a few minutes ago and this is my first post. Its long and its pretty rambly but I needed to get it all out there. Thank you for welcoming me into your community. I'm glad a place like this exists. My mom has been having severe headaches for about two months now. She'd take some medicine for…
-
is anyone willing to give advice to a caregiver/sister
I am a sister as well as a caregiver in need of counsel from someone with experience as a patient. I feel disconnected, at a loss, and immobilized. I find myself literally holding my breath, obsessed with each update and waiting to exhale. Is anyone willing to advise me?
-
PXA with or w/o anaplastic features & BRAF mutation
Hello. I am just trying to do some research, I was wondering if anyone one here who has been diagnosed with a pxa w/ or w/o anaplastic features also has the BRAF mutation and what your course/experience has been like.
-
My husband has inoperable Glioblastoma Grade IV
We found out December 10, 2010 about my husband tumors. It it has been almost 10 months of ups and downs. My husband is 48 this month. We found out because my husband was having trouble sleeping. We went to the doctor thinking he was under stress at work. They told us he has several tumors. We married Jan. 3, 2011. He went…
-
Good MRI, but bad symptoms
Today my daughter got good news about her tumors. The MRI showed decrease tumor activity,but they can not answer why she is doing poorly. Has anyone had this happen. She has slurred speech, loss of appetite, cold legs and hands, bowel accidents, weak legs and a cough. She takes Avastin and no other treatment. She does take…
-
[GBM VI] STOPPING CHEMOTHERAPY - Need Advice PLEASE
Hello all, I was diagnosed with GBM VI in April 2013. Went through surgery and 40 days of chemo + 30 days of Radiation. After doing a lot of research and talking to many about these conventional treatments, I have decided to stop chemotherapy. There are many reasons why I have chosen to stop chemo however I am now starting…
-
hard to connect
I'm glad that our cancer is so rare that there aren't very many of us out in the world, but it is frustrating in some ways because it's difficult to find and maintain connections on boards like this one. I check here frequently, but it seems as though the members from the past are either recovering well, or have lost the…
-
after chemo scalp itch
Please if anyone has some guidance on what product may help with scalp itch. We have just switched to using Johnson/Johnson baby shampoo. If you have had good success with any OTC cream that will give relief please let me know. We have used aquafor and that helps. Hoping to find somethng that works quickly. Wife's hair is…
-
Diffuse Fibrillary grade II brainstem glioma
My son is 9 years old and was recently diagnosed with a grade II diffuse fibrillary glioma (astrocytoma) in the mid brainstem. He has suffered migraines since kindergarten and now they have developed into status migraines lasting for weeks at a time. His tumor is in the Mesencephalon. We have been told by his NO that these…
-
Trying to look at things differently
I was listening to Joel Olsteen on TV, and he helped me realize that worrying and stressing doesn't change anything. We need to put our trust in God. None of this that is happening caught Him by surprise. He's knows exactly what we are going through. We just need to hold on and be strong. He will bring us through this.…
-
New to Site, Need Advice
Hello all. My Sister starts full brain radiation today. After many months of chemotherapy for lung cancer (and others), the cancer has spread to her brain. What side effects should I be most aware of to help with deal with this new treatment? With Chemo, she has already lost her all her hair and can be forgetful (we call…
-
GBM IV - Etoposide
Hi all, My father was diagnosed with GBM almost 3 years ago. Yesterday we found out that in the last two months since his last MRi his tumor has spread and almost doubled. He had been on temozolmide the last year everyday low dose and yesterday we switched to Etoposide low dose every day. The down side to all of this is…
-
glioma brain stem tumor
My name is Katie and I am 23 years old. After having headaches for months my doctor ordered a mri in July and he called me the next morning and said something came up on the mri and he got me a appointment with a local neurology doctor. Well he told my husband, my mom n law and I that it was a tumor but hasnt seen one like…
-
I'm new here. AA3
I'm 61 yrs old however am a world ranked show jumping rider. I was showing horses in mid July of 2012 and just stopped speaking. I took 3 aspirin thinking I was stroking out. I continued to ride 2 horses then called 911. Aug 1 I had brain surgery and refused complete removal of the tumor(about 80% removed) which would have…
-
ADULT Diffuse Intrinsic Pontine Glioma
Hi, anyone out there dealing with this rare insideous monster? Was diagnosed 9 years ago with waitful watching due to location. Looks like it finally woke up. Would like to swap stories, symptoms, treatments, etc. Thanks