One patient with glioblastoma still alive nine years later
by ellasviews on Wed Jul 06, 2011 09:16 PM
My daughter has the above brain cancer - I would like to talk with some surviovers, I know there are many, would like to join a disscusion.
by karynk on Thu Jul 07, 2011 01:10 PM
This is my husband's tumor, which he has been diagnosed with for 10 years now. There is a lot of information on what he has gone through in my profile, anything else, just ask.
by kishi on Thu Jul 07, 2011 04:34 PM
I got anaplastic astrocytoma G III. Sorry for your daughter.
Avastin since 2010 chemo radiation since 2006. It is in the cerebellum inoperable.
by jefuchs on Thu Jul 07, 2011 07:16 PM
My wife has oligo (not mixed), but the grade is uncertain. The biopsy results said grade 2, but the MRI looks more like grade 3. Grade 2 isn't supposed to be so widespread.
What scares me most is that almost every article I read says that the patient's age at diagnosis is a universal indicator of prognosis. She was diagnosed at age 49, which most studies agree is a bad sign. Some very young patients have been cured. Middle aged and older ones have not.
Another factor is the 1p 19q deletions, which I imagine you've heard of. Was your daughter tested for this? My wife has the deletions, which is good news, and might just cancel out the bad news about her age.
Oligo is an unpredictable disease. While the medical literature consistently claims a 3-5 year survival for grade 3, I seem to find nothing but long-term survivors on these messageboards.
The good news is that there's room for optimism.
by jefuchs on Thu Jul 07, 2011 07:33 PM
Info about my wife's treatment: She has not had surgery, except for the biopsy. Her neurosurgeon said that the widespread footprint could not be tackled surgically. Her MRI looks like there's mostly one smallish main tumor, but doctors have pointed out that there are affected areas that cannot be excised, so it was decided that chemo would be the best treatment. She sees Dr. Pudivali at MD Anderson. She also called Duke, and was told that her treatment is exactly what they would have recommended.
Medical articles usually say that surgical removal is the first line of treatment, followed by radiation, chemo, or both. I'm disappointed that her tumor was not removed. If it starts giving her trouble, I believe they'll remove it.
In January, 2010 she began a 5/23 schedule of Temodar, which cleared up the cloudy-looking areas of cancer, and left the most visible tumors almost unchanged after 18 months of treatment. She stopped chemo last month, and we're in watch-and-wait mode now. Next MRI is set for September.
by suechuckp on Wed Apr 25, 2012 02:50 AM
My husband was diagnosed w MOA III 12/2011. He had two surgeries, one to save him due to too much ICP (intracranial pressure), 12/11, and the other 1/2012 to remove as much as possible at a different hospital - Henry Ford Hospital in Michigan. They are topnotch. He then had six weeks radiation with chemo to kill the 20% remaining tumor mass on his insula (too dangerous too remove cuz it was could affect his speech, make him mute, and he already had low vision). Great news, the MRI on 4/2 (two weeks after radiation w/ chemo stopped) shows tumor mass is gone. Enhancement of area at side of cavity where tumor mass was removed by surgery, chemo (temador), to address this. Next MRI at end of May 2012, two weeks post end of second cycle 5/23, of chemo
by elhamelli on Sun Jan 20, 2013 08:10 AM
On Jul 07, 2011 1:10 ?.? karynk wrote: This is my husband's tumor, which he has been diagnosed with for 10 years now. There is a lot of information on what he has gone through in my profile, anything else, just ask.
On Jul 07, 2011 1:10 ?.? karynk wrote:
did he had anaplastic oligoast grade3? and what was his treatment?
by shiby on Wed Mar 13, 2013 01:50 PM
Hi karyn, just found your note about your husbands tumor.
my wife has the same tumor and is in her 14th year.
it has been and is still an ongoing rough ride for her but she is relatively doing sort of ok.
She does require full help and hasnt driven a car since 2007 due to reguar seizures.
How is your husband doing with his?
by karynk on Wed Mar 13, 2013 08:52 PM
My husband died in November 2012 after an 11 year 4 month battle. Feel free to add me as a friend, my profile (which I think is friend's only) shows everything that he did treatment wise. I will add to this that he decided to do nothing about his tumor for almost 2 years in a row....not even MRIs. He was fed up with all of it, and had been referred to hospice once in 2009, and went on to live 2.5 yrs more. He had serious seizure issues in his last months, had a bleed during his last surgery, and had bilateral pulmonary embolisms and a DVT which were the final set backs that made us decide on hospice. His last crew of doctors were amazing though!
I am still involved where I can be here, so just add me as a friend or post here if you have any questions.
by Cynthialynn on Mon Dec 02, 2013 06:02 AM
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