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https://www.google.com/search?rls=en&q=Glioblastoma+support+... Start right there: You need to find people who have gone through what your going through. Im sure some of them have already parsed this information, and would be better suited than any of us in helping to sort through it. As for finding specialists, your current doctor, and the people he recommends are your best bets. The medical community is a strange o…
I know it feels productive to start reading as much as you can about the disease pathology and treatments, and it won't hurt to be more informed, but for a stage IV GBM, your time would be much better spent trying to get hooked up with the best docs in the country. It's a terrible thing to deal with and some doctors have spent decades immersed in the research and literature -- let them be the experts but make sure you find someone who can give your relative a chance.
From everything my wife and I could find, there is no such clearinghouse that is publicly available for what is the "best info," or for readily comparing studies. Because the research on treatments is changing so rapidly, it really does take a scientist (read: your oncologist) to filter through the different papers and compare the stage-based 5y EFS rates, review risks of that treatment, and figure out the pro and con to your relative's situation to determine the best treatment protocol.
This is further complicated by the fact that not all protocols and studies are publicly available. Some groups actively hide information from public view to prevent the "Web MD" effect. The treatment protocol we ended up with for my daughter is widely used and studied in some countries, but was never before used at the hospital we were at. We felt very comfortable with it when we reviewed the literature with our hem/onc, but as the doctor was part of a particular oncology group that shares research and studies, only they could find the critical information. At one point I was looking for more in-depth details, and because of the restrictions by the oncology group, our Dr had to be very careful about what they could and could not show us. I could read some studies in their office on their screen, but could never get a copy of the PDF.
Trust in your medical team. If you aren't getting the information your family needs, ask for more. If you still feel like you aren't getting enough information, then maybe re-evaluate if you have the right medical team.
Now, all of this is written as if you get to have contact with the medical team. If the close relative doesn't want you to have access, please respect their right to pursue the treatment your relative and their doctor have selected as most effective for their highly individualized case. Support them in their quest to get the right information, but don't pry and second guess. I come from a family of medical scientists and medical professionals, and believe me, there can be a very fine line between curiosity and help, and prying.
Good luck to you and your family.
There is a standard treatment path for GBM. whole brain radiation with temodar, then a few other choices on recurrence. Any regional hospital / cancer center can do this.
If your family wants to get more aggressive, they have to get into one of america's cancer centers. For GBM, I remember UCSF, UCLA, MD Anderson, Duke, Sloan Kettering, Boston Women's ( Mayo never came up for GBM in my research but maybe I'm misremembering ). My method for finding these centers is to scrub the clinical trials database and see who is offering what trials.
In terms of how to ingest all the data --- I'll tell you what I did. I sat in UCSF's library for two days and read like a demon. I read all the articles on GBM going back 20 years, and when I didn't understand a term of concept, I pulled a textbook. As a "hacker" you'll find drilling down on one disease isn't _that_ much information. I was then capable of having realistic and high bandwidth discussions with all of the doctors involved, including some of the nations premiere neurooncologists.
Right now, interesting clinical trials focus around immune system treatments (monoclonal antibodies). That wasn't around when I did my thing, and my info is all out of date.
If you live in the bay area, you might have a friend at Genentech. You should scrub your linkedin friends. They're at the front of most oncology research, and main HQ is at the oyster point office.
Your local doctor(s) won't like moving to a regional cancer center. It's a terrible fact, but they'll tend to drag their feet, tell you won't get personal service, make record transfer difficult, and claim they can do the same treatments at home. Part pride, part truth, part profit motive.
Warning: it's a subscription service.
He was 32 at time of diagnosis, he's an inspiration to me every day to persevere through any of my struggles that I perceive as difficult.
My advice, which was my sisters strategy in keeping her husband alive, is to get as many opinions as possible about the most aggressive treatment strategies available (depending on tumor location, etc) and formulate a plan to try and eliminate as much of the tumor(s) as you can. The occurrence rate on these grade tumors is insane, try anything you can to get into an amino therapy clinical trial, or any other trials that they may be eligible for. My brother in law participated in the MK-1775 trial.
I built a little WordPress site for him: youcanthurtsteel.com
Please email me, or message me if you have any questions that I can answer from my perspective & I'll do my best to convey what my family has learned about this terrible disease.
Here's a youtube clip: https://www.youtube.com/watch?v=8Fo2uNqKMR8
Also, http://www.voicesagainstbraincancer.org/ is one of the best foundations that you can help raise awareness for. He's become an advocate for their cause, http://www.voicesagainstbraincancer.org/james-j-hanson-bio/
Your friend, Nick
I don't know much about GBM, but I wanted to give you some general advice. My first oncologist seemed great, but my wife pointed out that he was 'interviewing for the job' and there is no reason to not find the best available doc. So I googled like crazy, found a few great lymphoma clinics and settled on Mass General in Boston after chatting to them on the phone. I flew out there (6 hour flight) and spent a week getting a second opinion including PET/CT scan. It was so very very worth it. From the amazing doc there I got a referral to a world-class local clinic and well known oncologist in my local town and started treatment within a week.
So I'd encourage you to A) Move quickly, especially if it's aggressive and B) Get a second opinion to make sure you get the best treatment available.
It's actually difficult to do both. But what I found is that the first oncologist I worked with was actually not moving as fast as he could have. The local hospital had about a 9 day wait time for my initial PET/CT scan and my doctor could have scheduled it a day or two earlier but he just didn't get around to it. By flying out to Mass General I got my scan earlier because there's less of a wait and I got a doctor and team who move very very quickly.
With what I have (DLBCL Non-hodgkins Lymphoma), there are various genetic subtypes and tons of literature. I had my pathology sample sent to mass general for further DNA level analysis and ended up with a ton of literature and the doc was happy to have conversations as technical as I would like. What I realized is that I don't have the background to understand much of the literature. (I'm smart, but not in medicine) Also the percentages you deal with when you read about outcomes become meaningless because the studies are done on groups and every individual case is different. So what seems to be the best approach is to get access to the best minds in the business and have them guide you on diagnosis, interpreting results and treatment. I have now worked with three oncologists and two of them have been incredible and are world-class in their field. That seems to be working out quite well.
I would also add that it's not just about finding a great doctor. It's important to find a great team. That means: admissions nurse, scheduler (very important because with some treatments it's critical you don't miss a dose or schedule), other nurses who administer treatment and so on. The team at Mass General Lymphoma clinic is amazing. If you're reading this and do have lymphoma, get in touch with 'Mutsi' the admissions nurse, and try to get scheduled with Dr Effi Hochberg who is an amazing amazing guy and affiliated with Harvard Medical School. I'd hope that your friend can find a similar clinic that has a great team and doctor and is really great at treating GBM.
Some further unsolicited and anecdotal comments that might help your friend:
I've just finished my third cycle of R-CHOP (my particular flavor of chemo), feeling great and looks like I might actually beat this thing. Getting a CT scan in about 3 weeks to find out more.
I've kept this whole thing private except for a small group of about 15 very close friends and relatives who know. They have been incredibly supportive and what has really helped me is just talking to my friends in person or on the phone. I'm generally a very positive and energetic person and I seem to be offering them more life advice than them giving me support, but just talking about anything, whether related to the disease or just unrelated stuff, it REALLY helps keep me energized and positive and generally happy. So I'd encourage you to make yourself available without being overbearing and suggest your friend connects with those close to them and stays in touch. What I've done is send out an update every 3 to 6 weeks to my core group just letting them know how I'm doing etc and that leads to further conversations.
Also I've managed to keep mountain biking and running during chemo which is a little unusual, but it's kept me sane. Some advice I got was to not 'stop everything' while dealing with this. I don't know what your friend's physical situation is but if they can keep their life as normal and ongoing as possible it will (in my experience) keep them much more positive and energized and generally happy. Symptoms vary so much and I know this from my treatment facility and seeing the huge spectrum of physical conditions as people go through treatment - so totally understand this may not be possible. But if it is I'd encourage it.
Getting a diagnosis like this is crazy. You actually have to develop a sense of humor about it I think because it's just one of those things that is supposed to happen to other people. Not you. I think everyone has their own way of dealing with it, but for me what has worked is to have a bit of a sense of humor about it and then to focus on the problem aggressively and stay positive.
Best of luck to you and your friend.
I went through this - I was a caregiver for my partner who was diagnosed with GBM. It's a terrible disease, and by terrible, I mean most people have no idea. It's one of the diseases with an extraordinarily poor outcome ratio (under 5% past 2 years, depending on age, young people might be at 25% two years 5% three years) and terrible end of life scenarios. I can only hope that your family member is fairly old, it's a…
I found my local doc was awesome when I got a second opinion from Mass General and then moved treatment to a major regional center in my local town. They moved very quickly and were cooperative. So didn't have a bad experience there personally, but YMMV.
Conference papers aren't much use here, really. I'm no expert, but in your shoes I would be looking for the most experienced panel I can find, hopefully with neuro specialists preferably (e.g. a neuro-radiologist, neuro-oncologist, etc. as specialists). If there is a teaching hospital with a good reputation in your area they may be more current on techniques than a purely clinical one (but this isn't hard and fast).…
> is there any tool out there to compare what works vs what does not work as well
That's what the medics really do. Get good medics and thrust them, but don't thrust them blindly. Read a lot to be able to understand the medics and the tradeoff they are making. [They are always making tradeoff.] Ask a lot of questions, dumb questions, intelligent questions, lots of questions. [But remember to be polite asking.]
Don't believe everything you read, it's full of snake oil written by crackpots and overhyped press releases written by universities.
I'll start with Wikipedia and MedlinePlus, to get a high level overview.
[And remember to sleep and eat healthy, you will be more helpful if you are healthy.]
Best luck to you and your relative.