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Old 2012-04-12, 8:10 PM   #1
GBGirl
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Health Do any of you have information on Glioblastoma?

My friend I referenced here just received the pathology report. His girlfriend said that they told her it is grade IV glioblastoma, which wikipedia says carries about a 12 month median survival rate, and only a 4% 5-yr survival rate.

He's 23, physiologically female, and has good neurological function right now, as far as I know. When they found the tumor they removed as much of it as they could, but I have no other info at the moment.

I know a lot of other forumites have histories of people with cancer and such. If there information out there I might not find with my googling, or info on what I can do as a friend who's about 2 hours away at any given time?

So. Yeah. Information would be helpful, and prayers and positive energy would also be appreciated.
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Old 2012-04-12, 8:35 PM   #2
Arctyc
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At this point all you can really do is be a good friend to them. A grade IV glioblastoma is a scary thing, and you may only have so much time left with them now.

I'm sorry I can't bear good news, but it is one of the deadliest cancers out there. Hold onto hope, but also be at peace with the concept of death.
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Old 2012-05-11, 2:56 PM   #3
GBGirl
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Quote:
Originally Posted by Arctyc View Post
At this point all you can really do is be a good friend to them. A grade IV glioblastoma is a scary thing, and you may only have so much time left with them now.

I'm sorry I can't bear good news, but it is one of the deadliest cancers out there. Hold onto hope, but also be at peace with the concept of death.
Well, I went through about three days of feeling shitty about the idea of him dying, but then I researched deeper than the wikipedia article. The death rate of glioblastoma is very much influenced by the fact that most people get it at the age of 66 - younger people tend to have higher survival rates than the "5% make to five years" rate of the whole population (granted, that rate is also pretty shitty, but it's better than 5%, and it is influenced by historical data).

A couple of cool resources I found:

The Young Adults Surviving Glioblastoma forum. Posts are made by those who have been diagnosed, who have survived, relatives, and caregivers. It was a lot of help in giving me hope. Some of the people on it have survived 10, 16, 17+ years.

There are new treatments coming out for GBM, such as
  • The novacure (electromagnets attached the the person's head 24/7 to prevent the tumor from growing; currently in trials)
  • THC+cannabinoids in conjunction to the standard chemo (temodar) (seriously, check out one of the graphs below. I also recommend the whole study, as it is very readable and really cool). Unfortunately, there hasn't been any trials with humans [the one done in Spain involved 6 people in the end stages of their cancer, and the researchers injected THC (without cannabinoids or temodar) directly onto the tumors twice during the course of the study].
  • There are a variety of "vaccinations" being developed (and in trials), where the researchers use patients' own tumors to make a custom vaccine that teaches their body to fight the tumor. I haven't looked into this one as much, yet.
  • Heavy doses of Clomipramine Hydrochloride (an antidepressant) has been shown to help induce cell death in GBM tumors. I haven't read these studies yet.

Stuff that probably doesn't work and may be a waste of money - but since regular treatment tends to only keep patients around for 2-ish years, I'm gonna look for some literature regarding them anyways
  • Ruta-6 (a supplement)
  • the Burzynski clinic (a guy in the south who runs a clinic where he claims to have cured cancer)

As for my friend-

He just had a second brain surgery on Monday, was released on Thursday and is doing better than he was after his first, emergency surgery. The surgeon says they removed 99.9% of the tumor. He's going to start chemo and radiation next Wednesday. He has rehab to go through for his memory (I didn't notice a difference, but apparently the surgeons hit a spot they didn't intend to).

Any resources for brain rehab would also be appreciated.
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