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Brain Cancer

1p19q chromosome deletions
I've read in several posts on this site about the 1p19q chromosome deletions topic, and that several readers of this list have had this test, which I understand can be valuable prognostic tool and predict how a tumor responds to chemo. Our son (age 34, dx 4-13-11, AA3, inoperable) has not had this test, and when I brought…
Don't tell me
It is the middle of the night and I am at John Hopkins. It is dark and I am typing on my apple computer. My beautiful sister is resting in her bed from the surgery. It went well: the cyst is drained the reservoir is in place and she is neurologically intact. Emotionally, well that is another story. This whole ordeal makes…
HOPE for glioblastoma!
Yay for ICT-107 Phase II Clinical Trial - FDA APPROVED! The dendritic vaccine is making progress! There is HOPE, Julia
child oligodendroglioma survivors
Hi everyone, I am trying to connect with others who were either diagnosed with an oligodendroglioma when they were a child or are a parent of a child dx with an Oligo. My son was dx at 8yrs old with an Oligodendroglioma BT and was operated on to remove it. I hear so many stories of reoccurence in adults with this but would…
lack no muscle/leg control to use bathroom
I'm on dexa (decatron) since my lung cancer met'd to mybrain in 6 places, causing problems with standing on my right leg. It is hard for kevin my boyfriend and my sistr karen to stand me to help me toilet at night. even in conjunction with using wheeled push walker. i got call into main hospice whom i now call first about…
lack no muscle/leg control to use bathroom
I'm on dexa (decatron) since my lung cancer met'd to mybrain in 6 places, causing problems with standing on my right leg. It is hard for kevin my boyfriend and my sistr karen to stand me to help me toilet at night. even in conjunction with using wheeled push walker. i got call into main hospice whom i now call first about…
lack no muscle/leg control to use bathroom
I'm on dexa (decatron) since my lung cancer met'd to mybrain in 6 places, causing problems with standing on my right leg. It is hard for kevin my boyfriend and my sistr karen to stand me to help me toilet at night. even in conjunction with using wheeled push walker. i got call into main hospice whom i now call first about…
Gene deletions?
I've been trying to find older posts that included the term "gene deletions" and how it works with Temodar. Our son's doc has never mentioned that to us (son age 34, dx 4-13-11 AA3, inoperable) but I don't know enough about it to even ask the question. Does the test to determine this deletion have to be done at time of…
gmb 4 gone all ready
My sister is gone, less that 8 months from this worst nightmare to the darkest of dark...
"Fluid collection" in Brain after Radiation
Hi, My sister was having progressive weakness of her left side and some balance issues. She just completed her 6 weeks radiation. The docs were debating steroids but because we heard so many negative things about them we were reluctant. My sister is such a strong person. She is willing to endure a lot and never complains.…
Clinical Trail for Brain Cancer
I have a daughter who was recently diagnosed with a brain tumor. She has had surgery, radiation and chemo. I was wondering if anyone has any advice for clinical trails that has helped them. The doctor make things seem so gloom, but I see that their are surviors out there and there is HOPE.
Feeling a little weird after feeling better for a while
Haven't been on here in a little while...My last surgery was at the end of January this year - I have had two surgeries and radiation - I have a grade II Astrocytoma that can't be completely removed. I have actually felt better for many months....no seizures, not any really weird feelings, just speak a little funny…
Good MRI six months from dx
Our son (partial resection on 4-13-11, dx AA3, age 34) had an MRI yesterday. I was so glad that we got the results right away. At Ohio State, Dr. Caveliere always schedules the MRI the same day, previous to appointment time. He wants to look at the scans himself, then discuss the results with patients that day. I like…
antiplastic astrocytoma grade 3
I was told I have a Cancer called - antiplastic astrocytoma Grade 3. Just what is it?
Cancer spread to Brain Lining and Spinal Fluid?
Hello, I am usually on LC site, mom has SCLC w/mets to brain and spine. Brain and spine tumors have been treated with radiation very successfully. She has become weak and unable to stand, walk, roll over etc.....they have scanned entire body, all clean. They are wanting to do MRI of brain lining as well as a spinal tap to…
Son resistive to necessary resection surgery for Oligodendroglioma
My son 36 years of age was diagnosed with a Oligodendroglioma - Grade "2-ish", in 2006. Was asymptomatic, except for a Grand Mal Seizure, which brought him home to Strong Memorial Hospital for surgery. (He resides in Florida) Surgery went well and John recovered here for a couple of months, as he couldn't fly til…
feeling discouraged
Well, for those of you who are following David's progress.... David seemed to be recovering amazingly well from his brain surgery on 9/27. That was on a Tuesday...he was back attending college on Monday. He had a pretty good week...he was tired but SO happy to be back at school, and he was thinking that he could get on…
CCNU for GBM
My hubby, whose GBM was only in the optic chiasm and thus caused blindness, now has two new areas of GBM tumors - corpus callosum and near the basal ganglia. He had Temodar in '09/'10 for the three inoperable AA tumors, which still mind you look great. His Duke doctor is trying him on CCNU, but she's advised the prognosis…
Looking for similar stories. Experience.
My boyfriend was diagnosed with grade 2 Oligodendroglioma. He had surgery a month and a half ago. Location is Parietal Lobe, more centered. He is Left handed. After surgery we found out he was only partially removed, as a smaller part of this tumour has branched into the center, a place in his brain used to communicate…
Tell me I've got a fighting chance
In a nutshell, my husband was diagnosed with sinus cancer in 2003. His tumor was successfully treated with radiation and chemo and has not recurred in tht area. He has had several occurences in the lung that have also been treated with chemo and 1 surgery. Now we've been told there is a tunor in the brain. He's very weak,…
coming close to the end of GMB
In 6 days it will be 8 months from Dx of GMB. My sisters resperations are five a minute. I came home but am going back soon. Just dont know how to do this. She is calling for our Mom and Grandma. My heart is heavy...Not looking forward to what the next few hours hold... Just telling her how much I love her...and everything…
How to handle the painstaking wait for MRI results?
Hello, I'm new to this forum and new at this brain tumor business as well. My big sister(28years old) was diagnosed with a brain tumor (oligodendroglioma grade II)in November 2009. She underwent surgery in December 2009. She just had her follow-up MRI today and we’ll find out the results next week I guess. The surgeon…
Can't believe it--now insurance approved clinical. Now what?
Such an incredible roller coaster. But at least it's good news this time. When David first had a recurrence back in July, his insurance denied the treatment that his NO wanted to do, because the way the chemo was delivered---bypassing the blood brain barrier--is considered experimental. David's NO, Dr. Neuwelt, personally…
Temador and Oligodendroglioma
My brother in law was diagnosed with an Oligodendroglioma about five years ago. He's had surgery to remove part of the tumor, and is currently receiving Temador. His last check in showed the tumor has stopped growing, but he wants it officially in remission. I have been trying to do some research online for him, but he…
Anyone has tried GENE therapy and is cured?
Dear all, I am looking for people who have considered gene therapy (oncolytic virus). I truly believe that is where the cure lies. I have been reading on HSV, VSV, adenoviruses etc.. Any info would be welcome with open arms. It looks like from 2000-2010 it was all phase I/II clinical trial. A few phase 3. I spend every…
I don't know if my sister should take Temodar anymore
Hi everyone, My sister has anaplastic astrocytoma. I am terrified of course. I learned last week that she does not carry the mutation that would make temodar effective. So my question is: does she continue taking Temodar? I know, I know... I will talk to the neuro-oncologist. But the NO are themselves divided on the issue…
gbm4 and my sister
I hate this this cancer its cruel and unfair. Its taking my sister and I cant control it. She doesnt want to die !!!! We arent ready. The doctor is in the room with her kids right now telling them to stop the treatments. I had to leave I just couldnt hear the words that he was going to say. Saturday she was ok we watched a…
mesenchymal glioblastoma
I recently was given the results of a biomarker analysis of my GBM tumor. It was determined to be a "mesenchymal glioblastoma" subtype. I did not press my NO on the meaning of this, preferring to do some research on my own before asking questions. Overall I feel fortunate - other than a recent seizure I am doing well: I…
GBM GRADE 4!
My mother-in-law has just been diagnosed with GBM grade 4. They say she has a butterfly glioma and that it is inoperable. They have given her 4 months to a year. She is 59 y/o.I hate timelines and we are not giving up HOPE! I would love to hear what treaments have worked for others with this diagnosis. We are also…
Brain Stem Glioma
I am a 43 year old mother of 3 boys ages 12, 10 and 6. During my first pregnancy in 1999, I experienced pin & needle sensations in my hands and down my legs. The sensation lasted in my legs for approximately 6 months after delivery, and periodically resurfaced in my hands throughout the years. In 1999 I was sent for an…

Brain Cancer

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