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Their GBM specific list is here
http://braintrust.org/groups/gbm/
Edit:spelling
I'm a radiation oncologist. I strongly advise you ask your questions to an oncologist. The amount of information available is simply crazy and "normal people" can rarely appreciate the subtleties of a disease and its treatments. Unfortunately, 10 years of training is impossible to squeeze in a few hours of reading. That being said, Grade IV gliomas are usually being treated with a combination of surgery, radiation an…
Were it me or a loved one, my first criterion for a physician would be their view on quality of life and palliative care.
2: Understand that most care givers will provide advice based on their circumstances. For example, a radiation oncologist will tend to discount surgery and will tend to advocate the machines they have access to and experience with. This is ok, but you need to keep this in mind when deciding treatment.
3: Select a care giver who will quarterback. It is imperative that the patient trust and respect this person. It is imperative that this doctor understands the patient's goals for treatment.
4: Have an honest conversation with the relative about how far they are willing to go and what their main goals for treatment are. What's more important: quality of life or a cure?
5: Get all legal affairs in order right away, such as a will, medical power of attorney, etc. Decide on end of life care before you get there. Assign a trusted person to act when patient is unable to. Get all paperwork signed, and file a copy with all care givers and institutions. Make sure the family understands what the game plan is and who will be calling the shots.
6: Get a folder and put paper copies of all relevant documents in it, to include legal docs, test results, etc. Always get paper copies of all test results, etc. Always have this folder with you. Allow doctors to make copies as needed, but do not give away your only copy of any document. It's amazing how this one thing facilitates communication between all of the care givers.
Most physicians will advocate the treatments that offer the best hope and prospect for survival, often overlooking the terrible cost to what time the patient has left.
Please don't lose perspective on the most likely outcome while holding out hope for the best.
If your family member is interested and willing to travel, it would be reasonable for them to ask for a second opinion at one of the major cancer centers and/or to ask if there is a trial in which they might participate.
If your family member wants to stay local, then I'd still ask their oncologist if there is a GBM specialist in the area whom your family member can meet.
Mods should probably un-shadowban sibling commenter anon3315.
My mother was diagnosed with glioblastoma. She had the "standard" treatment, surgery to remove as much of the tumor as feasible, radiation and chemo. In the end, she passed away in about 4.5 months from her initial diagnosis. The doctors had originally given her 1-2 years; I don't know if that was just an optimistic estimate in order to give some hope, or whether my mother just happened to be one of the cases which didn't survive the average estimate (everyone can't beat the average...).
Due to other life circumstances, I didn't have that much opportunity to research the issue, but my takeaway was basically that you can group stuff you find on the internet into 3 groups: A) research, results which may be inconclusive or at least not dramatically better than the standard treatment B) desperate grasping at straws, typically by patients or their kin, not experts in the field C) scams prying on the emotional anguish of the affected persons. So my conclusion and recommendation would be to trust your oncologist, and/or if you want another opinion, ask another oncologist. Unless you're an expert able to distinguish the wheat from the chaff, don't put to much trust into whatever you may find on the internet. (FWIW, I have a research background, although not in medicine; YMMV.)
Beyond the medicine and treatment thing, a few other points:
Realize that glioblastomas have extremely poor 5-year survival rates (or however you wish to measure it). While a positive attitude is always important in dealing with any serious disease, the bottom line is that, most likely, your relative will pass away within a couple years. There is no miracle cure.
IOW, perhaps rather than obsessing over whatever cures may be brewing in research labs, focus on your relatives quality of life for whatever time she/he may have remaining. Also keep in mind that brain cancers are nasty in that they can change the personality of the patient, and towards the end they can get more and more incoherent, sleep more and more and eventually go into a coma. So if you have something important to say to or discuss with your relative, do it ASAP rather than wait until it may be too late.
My family, including my mother, took solace in that she had lived an almost full life, she was on the verge of retirement etc. I can only hope that your relative is also older, for a younger person I can only imagine how utterly devastating and hopeless it must be.
Best of luck to you and your relative.
Sorry to hear about your relative, and it's great that you're helping. I work in healthcare and uptodate.com is a godsend. It's most likely what your doctor uses to stay up to date. Here's one starting point: http://www.uptodate.com/contents/high-grade-glioma-in-adults... And then you'll see this links to a lot of more detailed articles about particular conditions.
I used it when my mom was in the hospital and it was very useful. I was able to get access at the local university library and then export all the useful articles to PDF.