Small trial suggests the scans might help, but experts aren't so sure
by glimmerstar on Fri Aug 19, 2011 07:03 AM
My 66 year old husband was diagnosed in June 2011 with an inoperable gbm. He previously had an mri w/contrast in Sept. 2010 but nothing showed up at that time. He had a seizure on June 29, 2011 and that is when they found this. Most of the discussions I see here are about tumor removal and surgeries. I would like to know if anyone out there my husbands age survives very long w/out any surgery. He is on temador and radiation, but I am concerned since he had no option to remove any of the tumor which is now golf ball size. I need to know how many others have been in this situation and what the survival time is. Are dangerous surgeries worth the risk? He woke up a different person just from the biopsy, with his hearing affected and his thinking and speech impaired.
by Jimslovingwife on Fri Aug 19, 2011 10:05 AM
by kat54 on Fri Aug 19, 2011 12:17 PM
Get a second opinion!!. I was originally diagnosed in 1993. When my tumor returned in May of 1995 the Dr.s told my husband to take me home and let me go in peace. My original surgeon agreed to do a surgery with no promise as to outcome but at least he would try. I was blind and totally disoriented but as the swelling went down and the surgery site healed my vision came back and I improved greatly. I now drive, play golf and generally do pretty good. That was 16 years ago this past June.
by sluss910 on Fri Aug 19, 2011 05:36 PM
by Dstew on Sun Aug 21, 2011 03:30 AM
There is always hope but on the balance of probabilities, the older one is, generally the worse the prognosis. Add in that it is inoperable and the odds get worse. My dad was 69 when diagnosed and there was even talk of just radiation and no chemo because at that age, stats say one year, maybe two no matter what is done. Having said that, there is the odd miracle patient so I fought to get my dad the best treatment he could. They said six months, he almost made it 12 so maybe your husband is the one in thousand that lives 10 or more years. Hope for the best but prepare for the worst is what my dad always taught me and truer words cannot be said in dealing with GBM.
by ladybugz on Tue Aug 23, 2011 01:28 AM
my husband is 60, and in great health. he was diagnosed Feb 2011 w/ GBM. a biopsy was done and several hours later, emergency surgery had to be done to clear a large clot. it was decided to try and remove the tumor since they had to do a craniotomy anyway, but were unable to get more than a tiny piece due to the vascularity and position of the tumor. The concern was either stroke or a bleed out was highly probable. So in Mar 2011, he started TEM/RT and clinical trial w/ Zactima. After the RT, he continued w/ the TMZ & Zactima, until July 2011, when new growth was observed along with a new lession. He is now on Avastin, continuing to do well, although the mental deficits increase almost weekly, along with horrible headaches. He will have a MRI on 9/19 and we will see then how successful the avastin is. i have big hesitations due to the fact that there was no stopping the tumor from the get go.
by MsRoxy on Tue Aug 23, 2011 01:50 AM
They are all different. Hollis lasted 20 months with the most insidious monster they had seen and he was a great patient and lived longer than anyone ever expected. So...just live. That is all you can do. Hollis was not afforded surgery. Nothing. So we will pray and hope and live and so will you. Peace my friend, peace. Roxy
by sonia09 on Sun Sep 04, 2011 04:53 AM
My mom was diagnosed at 68 with an inoperable tumor. We sent her scans to the US, UK, Singapore, you name it... every doctor confirmed that we shouldn't touch it.
Initially given 6 months, my beautiful glorious mom fended off further growth for 2 full years. She passed away one month after the 2 year mark.
Don't get freaked out by the fact that everyone seems to have a surgery.. i was in your place and we still got time, great great time.
by pulsepoint on Sun Sep 04, 2011 06:21 AM
Hi, the facility i would like to mention is Oasis of Hope in Irvine,CA 949-581-4673. I have heard they have a pretty high survival rate even with stage lV cancers and i have spoken to them to get my mother there. They are very compasionate and will answer any questions you may have. They even set up every thing by phone and can give you info to help you get there. Good Luck and God Bless.
by GBMhubby on Sun Sep 04, 2011 04:27 PM
The question asked is about the influence of surgical extent on the expected outcome of a diagnosis of glioblastoma. A number of factors have been found that influence survival statistics. Extent of surgery is only one of those parameters. If interested in seeing a table of those factors (with survival odds), the link below lists what is known as the RPA classes for glioblastoma. But be aware that the survival data is out-of-date in that it may not reflect the benefit of the current treatment regimes for GBM. Most importantly, there is a wide variation in survival time between individuals within a RPA class, a variation that is larger then the differences in the statistical average between classes. In my opinion, there is no reason to be overly distressed by a finding of "inoperable", the response to RT and chemo is key.
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