anyone have any personal experiences with family members or friends with GBM?

My uncle was diagnosed in July 08 with stage IV GBM in his right parietal lobe. If i remember right, the initial prognosis was 9 months without treatment, 12 months with aggressive radiation therapy and chemo.

Lucky for him, a local university (in Seattle, WA) was conducting clinical research trials on patients with GBM and he fit the trial parameters pretty much perfectly. I can't remember the details of the trial, but essentially it involved performing gene therapy on his bone marrow so it could withstand higher doses of chemo than it would be able to otherwise. He successfully underwent the gene therapy and began receiving doses of chemo that would kill a normal human (he calls himself "Iron Man")

A few months ago, he was kicked off the trial when it was discovered the tumor was growing and spreading. Since then he has lost most of the use of the left side of his body as the tumor begins to infiltrate the motor control regions of his brain. The combination of the growing tumor and the medications are causing him to be less than 100% lucid at times

He has already outlived every prognosis his MD team has given him, and he's got to be the most stubborn person I've ever met.

To date, I have been fortunate not to have experienced a serious loss in my family, but I know it is coming. It's pretty terrible having that impending loss hanging over our heads

I'm not looking for sympathy here, just curious if anyone else has any experiences with GBM they're willing to share, or advice for dealing with the inevitable

---
(i shouldn't say inevitable, some people survive many years)

[Edited on January 10, 2011 at 1:15 AM. Reason : .]

1/10/2011 1:06:41 AM

I don't have any experience with GBM, but I was curious. Why would they kick him out of the trial? Shouldn't his results be part of the data set? Or were they continuing on to another step with only people with certain results?

1/10/2011 8:04:41 AM

^that was my thought exactly. Admittedly, I don't know much about the methodology in conducting a clinical trial, but it *seems* to me that they're trying to cook the books on the trial to increase their chances of FDA approval and putting it on the market.

1/10/2011 8:29:11 AM

^I would think they kicked him out because his conditioned worsened and they were worried about the treatment killing him.

1/10/2011 9:50:40 AM

^ Still, shouldn't his results be included in the trial? I'd be curious to see how they report the data once the trial is complete.

1/10/2011 10:22:40 AM

my sympathies to you and your family.


It's always heartbreaking when my patients come back from surgery with that diagnosis.

especially when i find out they have a GBM before they do, its really hard to appear cheerful when you know their life is about to change irrevocably.

1/10/2011 10:52:14 AM

They probably will report the results... I thought the same thing as ^3 I would think they just didn't want the guy dying. Although, I've seen clinical trials where they warn you there's a chance of death..

1/10/2011 1:46:03 PM

First off, I'm sorry to hear about what your uncle is going through.

I work for a clinical research organization. Your uncle probably wasn't kicked out per say but rather "discontinued" from the study due to the possible increased risks associated. If the cancer is spreading and he is at risk for a SAE (serious adverse event) that might result in death, then it would have been reported that the patient had been discontinued due to the event. He's still counted as a patient because he was randomized but he's not considered "completed" since he was discontinued from the trial.

1/10/2011 8:40:28 PM

Unfortunately I understand what you're going through. A close family friend and my uncle both fought battles with glioblastoma multiforme. As you know, it's not of matter of if the cancer will beat you, it's when. Consider your uncle very lucky that he's lived a quality life this long. Both cases I'm familiar with have ended in about 6 months from diagnosis even with treatment. It's very very hard to deal with. The only good thing is as far as I know its relatively painless and in both cases I was close to, it ended fast. Enjoy the time you have left with your uncle. Sorry to be a pessimist but this disease sucks.

1/10/2011 8:54:51 PM

Quote :

"Why would they kick him out of the trial? Shouldn't his results be part of the data set? Or were they continuing on to another step with only people with certain results?"

I'm wondering the same thing. They kicked him off the trial since the tumor stopped responding to the treatment, but I would think they would want to continue treating him. I'm not a doctor though..

Quote :

"I've seen clinical trials where they warn you there's a chance of death.."

Since GBM has a fairly grim prognosis in most cases, the people that participate in the trial do so in the hopes of extending their survival time, and the risk of death is understood. I'm sure they have to sign some paperwork to make it official.

He was kicked off the trial once before, when his platelet count dropped to very low levels due to one of the medications he was taking. It took a while to discover the cause but once the offending medication was removed from his regimen, his platelets came back to normal levels and they put him back on the trial.

Quote :

"especially when i find out they have a GBM before they do, its really hard to appear cheerful when you know their life is about to change irrevocably."

when my uncle got the news about his biopsy and the GBM, he asked the doctor when he could return to work. the doctor "looked like he just swallowed a big hairy spider" and said that usually when faced with 9-12 months left to live, most people don't worry too much about work

1/10/2011 9:02:12 PM

Quote :

"I work for a clinical research organization. Your uncle probably wasn't kicked out per say but rather "discontinued" from the study due to the possible increased risks associated. If the cancer is spreading and he is at risk for a SAE (serious adverse event) that might result in death, then it would have been reported that the patient had been discontinued due to the event. He's still counted as a patient because he was randomized but he's not considered "completed" since he was discontinued from the trial."

[Edited on January 10, 2011 at 9:50 PM. Reason : See]

[Edited on January 10, 2011 at 9:51 PM. Reason : Here]

1/10/2011 9:46:34 PM

Quote :

"Still, shouldn't his results be included in the trial? I'd be curious to see how they report the data once the trial is complete."

They will report it and I'm sure he's not the only one they have discontinued. This happens all the time and basically you have to pull people out of a trial when you think there is a chance of them being harmed by the treatment...or if the risk of harm outweighs any minimal benefit. You still report that data. If you don't, you basically end up without a medical license like the Autism research people did.


GBM is a bad mother. Whats sad is that they have nearly doubled the expected survival with appropriate treatment after initial diagnosis, and its still between 12 and 18 months IIRC.

[Edited on January 11, 2011 at 8:18 AM. Reason : ]

1/11/2011 8:16:28 AM

Quote :

"They will report it and I'm sure he's not the only one they have discontinued. This happens all the time and basically you have to pull people out of a trial when you think there is a chance of them being harmed by the treatment...or if the risk of harm outweighs any minimal benefit. You still report that data. If you don't, you basically end up without a medical license like the Autism research people did. "

amen. i'm glad there's someone else in this thread who knows what they're talking about

do you work for a CRO?

1/11/2011 12:40:43 PM

What is a CRO? I'm a 4th year medical student, but I did some research and know the process pretty well.

1/11/2011 1:17:59 PM

oh hahahahaha that would be the other option.

CRO = Clinical Research Organization

1/11/2011 1:51:31 PM

a quick update ...

my uncle passed away peacefully this morning after fighting this cancer for more than 3 years. He stayed incredibly strong throughout, attending his son's wedding in 2009 and making a cross country trip in May-June of this year.

he is survived by his mother, his brother (my father), his wife, and his two children.

although I have only met a few people in person from tww, i would ask that you please keep my family in your thoughts and prayers

7/7/2011 9:37:38 PM

sorry for your loss, hopefully the research the Seattle university conducted will help other people with GBM in the future

7/7/2011 9:45:14 PM

That was his hope. An autopsy is being performed to learn more about his performance in the trial as well as his reactions to some of the medications he was taking.

His last few months he had started going to an Irish pub every day for wings and guinness, and he requested an Irish wake for after he passed away. Its being held in either Washington state, or Arizona... hopefully I'll be able to attend

7/7/2011 11:22:55 PM

So sorry for your loss..

7/7/2011 11:45:44 PM