One patient with glioblastoma still alive nine years later
by moniquecollee on Mon Feb 06, 2012 02:57 PM
My husband (44 years) always had epilepsy which was caused by a small tumor with cyste which he had for 44 years which never grew. With medication he lived a good life. However in 2009 he fell twice on his head which has led to permanent problems with speaking and concentration. However this deteriorated and recently after an MRI scan they saw this tumor and cyste were grown a lot and they immediately operated him and removed everything. However the results are awful; it appears to be all of a sudden a very aggressive cancer Glioblastoma Multiforme IV. Thursday he will start with chemo and radiation but doctors already said his life expection will not be longer than 1.5 years.
Please can you give me positive stories that somebody is living longer than prognosis and how this is achieved.
by menicole88 on Mon Feb 06, 2012 03:39 PM
Hi there -
I'm very sorry about your husband. My husband was diagnosed with Glioblastoma on December 1st 2010 at the age of 26. He has only had the standard treatment (Surger + Temozolomide + Radiation) and is still taking chemo pills every month. They weren't able to remove all of the tumor, and he also developed a blood clot in his lung. The doctors said they would be suprised if he lived to a year...but we are 14 months in and the MRI's have shown the residual tumor to be shrinking.
Hold on to hope, don't let them take it from you.
by jon4156 on Mon Feb 06, 2012 04:05 PM
Go to the following website and look at the raw-data and summary information for the PATIENT PROGRESS survey. All that data is contemporary and submitted by real patients reading forums like this one. While it is impossible to say how your husband will perform in comparison, there is ample data of people living with GBM longer than survival statistics would suggest and with very good quality of lives.
by GBMhubby on Mon Feb 06, 2012 05:18 PM
The 1.5 years mentioned by your doctors is the current median (MEDIAN) survival time for GBM. Median means that 50% survive longer than 1.5 years. No one can say how long for a particular individual, nor how to achieve longer term, except to use the best evidence-proven therapy. Temodar when first used large scale in 2000 gave a 10% survival at 5 years (it was 3% before Temodar). I suspect that, currently, the 5-yr rate is 15-20% at experienced treatment centers. A young age (your husband qualifies) is the biggest factor favoring survival. The patient outcome graphs at the UCLA NO website show many long term survivors.
Footnote: a study published by MD Anderson Cancer Center in 2004 concluded that survival time of those with cystic GBM was longer than average (Ref: PubMed 14743913). That fact, combined with the lower-than-median age of your husband, gives reason to be hopeful, while awaiting the next advancement in treating glioblastoma (there is an average publication rate of about 6 professional articles/papers per day on gliomas).
by siblingof on Mon Feb 06, 2012 05:45 PM
by siblingof on Mon Feb 06, 2012 05:50 PM
by Libra57 on Mon Feb 06, 2012 07:01 PM
Hi, just thought I would provide some information about my husband Scott. Tomorrow we will be celebrating 4 years since his surgery to remove his GBM. He had the standard treatment of radiation and low dose Temozolomide (Temodar), for 6 weeks, then max dose Temodar for 12 months. He had great qualify of life for 2 years, then started having grand mal seizures, so he is now on Dilantin and Keppra. His quality is starting to decline now, he will be 54 in April. So overall, he has done extremely well, considering original prognosis was 14 to 18 months. We are thrilled that he is doing as well as he is, he rests whenever he wants and stays hydrated.
The last MRI in December showed new growth, so now Scott is on Avastin, every 2nd week. He has another MRI this Saturday and then we will review results with oncologist on Friday, February 17th.
Everyone is different, even with same disease, and what everyone says here is correct - no one knows how long each individual will survive, when regrowth occurs, how tolerance levels of meds differs from one patient to the next. I never thought we would make it 4 years, but Scott always said he would do that and more, so I'm hoping he's right! Hope everyone's input helps you gain some perspective on the 'one day at a time' philosophy, and gives you some hope!
by jon4156 on Mon Feb 06, 2012 09:52 PM
Reading GBMHUBBY's reply I was reminded of an important consideration when looking at any statistics and that is to understand exactly what the statistics represent. When my wife was diagnosed I did my share of statistic research (doesn't everybody) and diving into the details realized that some of the statistics I was reading included death by any means, not just death by GBM. This is especially true when reading results of clinical trials which follow the participant until death. If that person dies in an auto accident, is murdered, etc, they can still be included in the statistical results.
by kat54 on Tue Feb 07, 2012 08:22 PM
monique, see my story under 19year GBM survivor and check virtual trials .com. there are several longersurvivors than me too
by Cristiana on Wed Feb 08, 2012 04:20 AM
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