4 ms·
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
by bbulkow 11y ago
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 heartbreaking disease for someone young.
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 That wasn't around when I did my thing, and my info is all out of date.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.
- anon3315 11y ago(See my comment below for context, currently undergoing chemo). Just wanted to comment that I'm a huge fan of Genentech. They developed Ritiximab (Rituxin) which I'm currently getting treated with. It's a monoclonal antibody as you mention and it's improved outcomes for my condition (DLBCL Non Hodgkins Lymphoma) by around 15%. It's given in combination with traditional 'CHOP' chemo and is called R-CHOP. It's also insanely expensive - about $5K per dose and I get 6 doses over 18 weeks. 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.
- zer00eyz 11y agoSorry for you and yours: Did you attend or find any support groups and were they useful to you? If they were can you point OP to them, as you know the ones in the domain. I know that in my personal case they made a big difference.
- GabrielF00 11y agoMinor correction - that's Brigham and Women's Hospital in Boston, not Boston Women's
- JoshTriplett 11y ago> I can only hope that your family member is fairly old, it's a heartbreaking disease for someone young. It's a heartbreaking disease, period, no matter who it targets. I hope the OP's relative has success with treatment, regardless of age. Nobody deserves to die.
- ekianjo 11y ago> 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. Thanks for your advice, she lives in France, but I will try to see what is equivalent there, as well as what medical trials are ongoing in such institutions.
- maj0rhn 11y agoIt looks to me like France has two main GBM groups: (1) Hospital Pitie-Salpetriere in Paris, and (2) La Timone Hospital in Marseilles. This page from Expertscape will help you find the individuals in those institutions who know the most about GBM. http://expertscape.com/ex/glioblastoma/c/fr http://expertscape.com/ex/glioblastoma/c/fr The page is not perfect (e.g. the top person is at Harvard, not in France, and the second person ranks high because of a clinical trial), but it's probably the most efficient place to begin your research.
- hokkos 11y agoThe first cancer center in Europe is in France near Paris : http://www.gustaveroussy.fr/ http://www.gustaveroussy.fr/