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Ask HN: How to Find the Best Info on Cancer Treatments?
188 points by ekianjo on Aug 30, 2015 | hide | past | web | favorite | 86 comments
Hi Everyone, one of my close relatives has been diagnosed with Stage IV Glioblastoma (GBM), and while there's literally tons of information online about treatments and procedures, how would one go about digesting it all ? For example there's 75 publications from the recent ASCO 2015 congress about GBM treatments, is there any tool out there to compare what works vs what does not work as well? Another question would be, how to find the best specialists in my Area for this kind of cancer?

Any help/advice is very much appreciated!




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 That wasn't around when I did my thing, and my info is all out of date.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.


Minor correction - that's Brigham and Women's Hospital in Boston, not Boston Women's


> 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.


It 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

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.


The first cancer center in Europe is in France near Paris :

http://www.gustaveroussy.fr/


Sorry 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.


> 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.


(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.


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 and chemotherapy (usually temozolomide). Surgery is either a biopsy or a resection. Glioblastomas have multiple "roots" making them very difficult to remove. Even after surgery they almost always recur. Sometimes they're located in regions of the brain where the risk of surgery outweighs any benefit (for example, the patient would be left unable to talk after the surgery); then we do a biopsy and go on to the next "step", which is radiation.

Radiation therapy is given daily over a few weeks. Based on a few factors such as age and general condition, the radiation oncologist will determine the dose and number of treatments (fractions) he recommends. Between 15 and 30 treatments is usual in patients that are in reasonable shape.

Again, based on general condition and a few other factors, someone (a neurosurgeon, medical or radiation oncologist) will prescribe temozolomide. It's usually given during or after radiation. That medication really improved outcomes and is now considered standard of care in people that can tolerate it.

Despite our best efforts, the disease usually comes back. At that point options can be limited. Some people will try clinical trials, but before you start travelling with a loved one across the country, keep in mind a few important things: this is a deadly disease so quality of life becomes very important. Spending hours in hospitals trying out toxic treatments has an important impact on that. Moreover, I haven't seen any breathtaking preliminary clinical trial results on GBM lately (that includes virus, weed and the likes). Participating in trials should be seen as a way to contribute to cancer research; I wouldn't go into it expecting to find a cure.

If you really want to have access to the information physicians use, you should check out the NCCN guidelines on Central Nervous System Cancers. It's NOT written for the general population and I would not advise you to even look it up. It can be really confusing and bring in more stress than it's worth. As I said on top here, better talk to a physician.

I hope this helps.


My beloved has been a clinical social worker for more than two decades. She's doing her third stint with oncology. In between she's done Alzhiemer's, geriatrics, and a ton of hospice work. I can't second enough the suggestion that quality of life is a primary consideration.

Were it me or a loved one, my first criterion for a physician would be their view on quality of life and palliative care.


Here's some info that might be interesting to you, altbeit it is not helpful for the original poster: I used to work at GSI (center for heavy ion research in Germany) and the heavy ion irradiation method developed there can alleviate some of the problems with treatment (primarily the roots problem).

The therapy consists of irradiation with heavy ions, which have two important helpful characteristics: a) they cause more severe cell damage, making therapy of some radiation-resistant tumors possible, and b) their damage is extremely localized in a so-called Bragg-peak, which means you don't have to destroy every cell on the path to the tumor.

Since it is a beam of charged particles, magnets are used to rasterize the tumor, irradiating only the exact tumor location and very little healthy tissue.

Unfortunately, a massive fuckup in the German health system has led to a situation in which there is currently one center that treats patients (HIT in Heidelberg), one completed center that can't go into operation (!) and there will be no new centers built for a few years to come.

The center in Heidelberg is understandably overrun with patients and only young, healty patients with inoperable brain tumors are treated (the precise localization of the cell damage allows for irradiation of tumors close to the eye or the brain-stem).

http://www.ro-journal.com/content/9/1/88


Do you know what sources oncologists used to keep themselves up to date?


There are many. Personally I will read the NCCN recommendations and discussion section. They're updated frequently. UpToDate is another website I like. I subscribe to Medscape oncology for cancer related news. Meetings are also a good way to stay up to date with what's new. Read by QxMD is an app I use to keep up with what's being published in my field.


Path resident checking in. Would you consider doing a genetic panel similar to the recent work from the Cancer Genome Atlas project's recently reported classification for lower-grade gliomas?

http://www.nejm.org/doi/full/10.1056/NEJMoa1402121


Um, slightly OT: If you want to participate in research around the Cancer Genome Atlas for other cancers, how do you do that?


A) find out who at your institution is already involved,

B) contact the IRB or clinical investigations department, they probably need to verify their institutional existence and will then have a list of whichever investigators they have vouched for.

C) ask on reddit: /r/bioinformatics

D) they have contact info on the website.


You're a mensch for being here. I just need to say that. This is a super helpful, good comment.


My brother in law was diagnosed with the same grade GBM, over a year ago. He was given 4 months to live & told his tumor was inoperable. He traveled to NYC the day after diagnosis trying to seek consultation with some of the top neuro-oncologists in the world at NYU, Penn, & Sloan Kettering (where the surgery was performed).

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


Thanks Nick, please let me know how I can reach you (email or other).


nick@klufas.me

Looking forward to hearing from you!


Aw, that's terrible. Sorry about your relative.

> Another question would be, how to find the best specialists in my Area for this kind of cancer?

I used to work in finance helping analysts evaluate biotech stocks, and one of my responsibilities was identifying thought leaders in the field and setting up consultations with them.

On metafilter someone asked a question "Let's say you wanted to find the very best ovarian cancer specialist in the US. How would you go about doing that?", and I answered[0] with the kinds of things I would do for my job. It might be helpful for you.

[0] http://ask.metafilter.com/267385/How-to-find-the-best-doctor...


1: Seek out care givers and institutions who deal specifically with this cancer rather than institutions that are generally excellent.

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.


Duke's Polio Virus Trial Against Glioblastoma sounds very promising:

Clinical Trials for Adults | A Phase I Clinical Trial for Recurrent Glioblastoma Patients Opens for Accrual at the Preston Robert Tisch Brain Tumor Center http://www.cancer.duke.edu/btc/modules/research3/index.php?i...

What '60 Minutes' Got Right And Wrong On Duke's Polio Virus Trial Against Glioblastoma http://www.forbes.com/sites/davidkroll/2015/03/30/60-minutes... http://www.cbsnews.com/news/polio-cancer-treatment-duke-univ...

Targeting Protein Synthesis Control for Cancer Therapy http://neuro.surgery.duke.edu/gromeier

Matthias Gromeier, MD | Duke Neurosurgery http://neuro.surgery.duke.edu/faculty/details/0238844


Immunotherapies are all the rage in cancer treatment these days. Please, OP, read the parent post, and get information on how immunotherapies work. There have been LOTS of advances lately, in many medical areas, thanks to these new techniques.

Some (rather basic) links from me:

https://en.wikipedia.org/wiki/Immunotherapy

https://en.wikipedia.org/wiki/William_Coley


One very important thing: your relative and people immediately affected should find a counselor and probably a physician that can provide medical intervention for the extreme stress and anxiety.

I was diagnosed with stage iv colon cancer a little over a year ago. I was in shock and emotionally completely numb, or so I thought. I started having anxiety attacks, but I didn't know what was going on - I thought I was dieing right then.

Eventually I wound up at the hospital where, after vitals and an interview about what I was feeling, they suggested what was really going on for me mentally and emotionally.

I now have anti anxiety medicines (Xanax) and I can tell when they're needed. I'm grateful for getting the psych support.

Ok, long winded, but basically a lot of what we deal with is made in our minds, and there is help available to mitigate the worst effects of this.

Good luck, and thanks to anyone here that works in the medical field, battling these diseases.


Do be careful with anxiolytics though, especially alprazolam (Xanax). They're horribly addictive drugs and very difficult to kick.


Duke is conducting limited clinical trials (5 cases with 100% success and no known side effects, although the "cure" is violent (because of the rapid rate of cancer tissue destruction)) of an oncolytic virus, PVS-RIPO, an engineered poliovirus, on GBM. http://corporate.dukemedicine.org/news_and_publications/news...

The PVS-RIPO trial is available for recurrent glioblastoma patients with only one tumor. The tumor must be surgically accessible; the size must be no smaller than 1 cm and no larger than 5.5 cm, and the tumor must be located at least 1 cm away from the ventricles. Prior exposure to bevacizumab (Avastin) is permitted. For further information please contact the Preston Robert Tisch Brain Tumor Center at Duke at (919) 684-5301.

http://www.cancer.duke.edu/btc/modules/Research3/index.php?i...

Note: most clinical trials have other requirements such as age, gender, health condition, failed/doing/discontinuing other treatments, so it requires some persisence and research.

See also:

http://killingcancer.vice.com


Duke and U-Penn are also doing early clinical trials of T-cell therapies (using HIV and other virii to train the own body's T-cells to identify cancer) and other novel approaches for attacking GBM.

https://www.clinicaltrials.gov/ct2/show/NCT02209376 (Novartis + U-Penn + UC SF)

http://neuro.surgery.duke.edu/research/basic-research/duke-b...


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). Don't ever be afraid to ask questions, and keep at it until get a clear explanation of the panels reasoning behind their suggestions.

Best luck to you and your relative.


I agree.

> 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.


Disclaimer: I'm a bioengineer, not a physician, so please seek further info from a MD.

> and while there's literally tons of information online about treatments and procedures, how would one go about digesting it all ?

This is actually a problem for practicing physicians as well, as knowledge transfers slowly across the industry. Many professional societies (American Heart Association for example) try to address this problem by releasing clinical practice guidelines which are suggested best practices for managing different diseases. You should check if the American Cancer Society or another equivalent group issues such guidelines.

I would also strongly recommend consulting an oncologist or a neurologist, who will be able to point you towards the best treatment centers in the area and the best treatment options.


Gliomas make up 80% of all malignant brain tumors. High-grade gliomas are fast growing, aggressive, and difficult to treat. Of these, glioblastoma multiforme (GBM) is the most common and the most fatal, with a reported survival rate of less than 10% in the first five years.

Interestingly, while GBM and gliomas have been highly resistant to traditional treatment, much of what is known about the demonstrated ability of cannabis to fight cancer comes from research conducted on GBM and glioma tumor cells.

Scientists hypothesize that because brain cells have the highest concentration of cannabinoid-binding receptors in the body, brain tumors also rich in these receptors may respond best to cannabinoids (chemical compounds such as THC and CBD as found in cannabis).

http://www.cbdfarm.org/glioblastoma-and-cannabis-oil.html

See for yourself how THC selectively kills GBM cells while leaving normal cells alone by watching this time-lapse video taken from an actual human tumor.

http://www.cbdfarm.org/blog/medical-marijuana-news/cannabis-...

http://www.medicaldaily.com/cannabis-shrinks-brain-tumors-as...


Do you know if THC are now routinely used for treatment in some places, or is it just anecdotal evidence at this stage?


The advantage of THC / CBD is that they have comparatively benign side effects and even help the side effects of chemo and radiation. That being said, there's a lot of pie-in-the-sky stuff around weed and I wouldn't take it too seriously other than a quality of life thing. However, CBD especially is pretty harmless so if you can get your hands on it I doubt it would hurt. I recommended it for my grandfather who has some sort of late stage brain tumor due to lack of side effects, but he elected to forego any treatment not related to quality of life so I don't have any first hand anecdote to share. I think there is a CBD clinical trial but I'm not aware of anything very scientific outside of in vitro or animal studies. If you PM me I can put you in touch with some researchers.


Enter the disease name in google and one of the first results will likely be the medical association that deals with the disease. Check out its web site. Others in the same situation are a good source of info so google for the disease name along with "support group" and also try the disease name and "forum". Abstracts of the medical literature summarize the state of the art and recommended protocols. Abstracts to all medical literature can be found at http://www.ncbi.nlm.nih.gov/pubmed . Enter the disease name in the search box on that page and then in the left hand panel click on Reviews to get all the abstracts of review papers. Registered clinical trials are shown at: http://www.clinicaltrials.gov . In the search box on that page enter the disease name.


I'd submit it's really not possible to digest the ton of information you've found with any confidence that you can pick the "right" path for your relative. After all, such large masses of information is why doctors specialize -- even they can't digest such quantities unless they spend large parts of their professional life living the information.

A better bet is to find an expert who has digested all that information, and use him or her as your guide. If you are not confident in the knowledge base carried in the brain of your relative's current doctor, you can find out the people in the world who know the most about GBM by looking here:

http://expertscape.com/ex/glioblastoma

Disclosure: my cousin developed Expertscape.


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 one, and "best" is a hard term to qualify. The best doctor might have the lowest rate of curing paitents because they only take on the worst cases. The "best" doctor might be the one who understands the outcome and makes sure that your treatment matches your lifestyle and acceptance of outcome (time here vs quality of life).

Find those support groups, really go find them and USE THEM. They are going to help you and yours in a time that is going to be really rough to get through. If you knew me personally the fact that I was telling you "go find a support group" would probably shock you, as Im not the type of person you would expect to recommend or attend such a thing. They will help you, it will be hard, its going to suck, but you should do it!


My daughter had cancer. Fortunately, she is still clear, but I have a pretty good idea what you are going through, both emotionally and with respect to finding qualified information. For what it is worth, I am very sorry your family has to go through this diagnosis and whatever comes next. Cancer sucks.

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.


What's the "Web MD" effect?


People self diagnosing and wanting certain very inappropriate treatments without understanding what's going on underneath.

Cancer(s) are different than athletes foot in that sense. You can look picture up on webMD, diagnose yourself, go to the drug store, and buy OTC medication to treat yourself.

You can't do that with brain cancers.


I'm very sorry to hear about your relative and I hope we are able to hear of them again :)

As an aside, my mother (who I did post about on here once under a throwaway) had stage IV brain cancer — the complexities of I'm unsure of. However, she had great, great success with marijuana and it helped her tremendously. Chemo and radiation suck, but the marijuana makes it suck a bit less.

"Had"... she is in remission :)


I'm extremely sorry to hear about your relative. My mother was going through S3 colorectal earlier this year. Two tips: 1. Quackwatch.org - the work this retired doctor has done filtering the BS across the Internet is astounding. I even emailed him and he made himself available to talk to my mom. He said, "usually all they need is another voice to calm their fears". 2. Listen to them. Don't tell them NOT to do something. Just focus on the context and the most likely outcome. 3. Don't let them get "advice" from patients at the local acupuncture clinic or alternative treatments center. Or from Internet "testimonials". It's all about the first-hand. Talk to the oncologist and see if you can find patients that have been through it. My mother feared the ostomy bag absolutely. A week after she had it, she forgot it was there!

The hardest part will be before surgery.


Talk to oncologists. They will contextualize the material, explain it to you through the lens of actual experience, and they will be happy to refer you to doctors with a different approach or opinion. If you're up front with them about wanting to geek out over papers, they will geek out with you and give you valuable perspective.


Hi, someone who has lost 2 family members and a close friend to cancer here. Not a medical person so I won't touch on that other than to say be aware that whole brain radiation brings on dementia. They typically won't use it unless it is use it or you die and they count on the idea that if they are using it means that the patient doesn't have long. At least that's what I've been told by a friend who's wife has brain cancer.

My advice is to take full advantage of every minute you have with your relative. The doctors are frequently upbeat and paint a picture that is not realistic (my dad thought he had another 3 years, he was gone in 6 months. My mother in law thought she was going back to work, she was gone in 2 months. The doctors should have been more realistic).

One of my great regrets is not pushing to get all my mother in law's friends gathered for a party. She insisted that she didn't want to do it "until she was better". She was "fine", bed ridden, but alert, mostly not in pain, we could have had a party. What I should have said was "That's cool, we'll have another one. Let's do two, I'll set it up". Instead I folded and I regret it too this day, I'm a weird dude, I actually loved my mother in law, she was a cool lady.

tl;dr: go see your relative NOW. Hang out, drink some wine, tell some stories, or just hold each other.


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.


When I talked to my doctor friends, they all mention using this.

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.


I'm terribly sorry to hear about your close relative. Given that it is diagnosed as a stage IV GBM, you are likely looking at some combination of clinical trial based and standard of care therapy. Do not attempt to sort through the confusing web of information on the web or from publications. Many of them need the kind of context that only an academic oncologist can interpret and dont always translate to an increase in individual survival rates in a clinical setting. First and foremost, find an academic cancer center near by, preferably an NCI certified comprehensive cancer center (http://www.cancer.gov/research/nci-role/cancer-centers/find). Secondly if your relative is willing and understands the risks, find them an applicable clinical trial to enroll into. The biggest obstacles to effectively treating GBM are the location of the tumor(s), the existence of the blood-brain barrier and the highly aggressive nature of tumor growth. All the best and I really hope you and your relative can find the strength to get through this difficult phase.


For treatment today you probably want to look at either Cochrane Collaborations - meta reviews of many published papers. You can also check out the NICE guidance. The evidence they use might be useful to see if stuff works or not.

https://www.nice.org.uk/

http://www.cochranelibrary.com/


http://www.uptodate.com/ has good information, but it is paid. From Clinicaltrials.gov you can get lots of information, and then start research on the molecule or protocol. Pubmed has lots of interconnected information. Best option is to find a specialist, a good understanding with doctor is important so that you can be more open with him.


I was diagnosed with a low grade diffused tumour about a year and a half ago after having a seizure at 26. I understand the difficulty of having to grok through all that terse information. That said, I found http://astrocytomaoptions.com/ by Stephen Western to be a helpful portal of information.

All the best to you and your family.


http://www.cancer.gov/about-cancer/treatment/clinical-trials... is helpful for finding clinical trials and allows filtering down to a region. Be aware that you can get treatment in major cities and get free lodging provided by the American Cancer Society. For example, in Boston you and your loved one can stay at Hope Lodge, http://www.cancer.org/treatment/supportprogramsservices/hope..., for free and be within walking distance of Dana Farber and Brighams or take a train to MGH. Wish you and your loved one the best!


This advice is just to check out personalized medicine, in which they determine the exact cancer you have and clinicians employ a medical database to put together treatments to target your exact cancer.

Check it out: http://www.foundationmedicine.com/

-Warren


Very good advice. Another good resource is https://www.patientslikeme.com/


Sorry to hear about that.

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.


Where is your relative living? Typically the university hospitals have the best experts, ie UCSF and Stanford in the SF Bay Area (although for a GBM, I'd recommend UCSF). There are various ranking sites that list the best hospitals and in my experience, they're a good place to start.

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.


There are folks that you or your close relative can talk to at http://www.abta.org/ American Brain Tumor Association. They can point you to care options, support groups, and quality of life issues.



A physician might be your best tool. In cancer, there are a staggering number of clinical trials (which are typically the mechanism to get the latest therapies before approval). In most cases, the standard of care is supplemented with the novel therapy.

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.


I'm no expert, but I've lost two parents to cancer, so I have a sense of the limitations to treatment. With every proposed therapy. Make sure you get an accurate idea of the range of possible results - best and average case time of survival and the impact on your loved one's quirky of life.

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.


On finding specialists. Call all the oncologists you can in your area and ask them if they are specialist for this type of cancer, if they aren't ask them they know a specialist.


That's what oncologists do. You aren't going to learn oncology in a week.

So don't find a treatment, find the best cancer treatment center you can get the patient admitted to.


There is T.h.e. Brain trust that hosts online support groups for brain tumor patients and caregivers. I am on the adult ependymoma mailing list. It is a good way to find specific hospitals and doctors to get in contact with. The ependymoma list has a couple of doctors that regularly communicate on specific questions.

Their GBM specific list is here

http://braintrust.org/groups/gbm/

Edit:spelling


It doesn't really answer your questions but you might check out the Fred Hutchinson Cancer Research Center. They had one cure and one still alive out of 7 patients with a new treatment.

https://www.fredhutch.org/en/news/center-news/2014/08/Gliobl...


U.S. News and World Report to find the best hospitals.

http://health.usnews.com/best-hospitals/rankings

Castle Connolly to find the best doctors. A small fee but worth it.

http://www.castleconnolly.com/doctors/


There are many suggestions here, but make sure to check Cancer Commons community out as they are trying to help patients and their close relatives for exactly this type of queries: https://www.cancercommons.org/home


If you know people at Microsoft Research, they have computational biology groups based out of Cambridge, UK and New England (Cambridge, MA) in association with Harvard and a number of hospitals there.

The research topics they are (or were) looking into is actually Glioblastoma. Apparently as a cancer, it has an extremely complex protein, rna, dna pathway that is bidirectional, making it one of the most complicated and dirty big data sets out there. There are also a signfigant number of problems with Glioblastomas related to computer vision, dosing, ect. Either way, Microsoft research Cambridge/new england does a lot of research on Glioblastoma.

So for example: this paper on stiener trees for big data research was used to find new protein markers for glioblastoma - http://research.microsoft.com/en-us/um/people/borgs/Papers/P...

Those protein markers may/may not be in early stage development for drugs - it is worth asking around about this.

Here is another about imaging in the brain:

http://research.microsoft.com/apps/pubs/default.aspx?id=1643...

If you have contacts there, this would be a good place to go hunting for help.

Other things:

get help for you. This is stressful for you too. You may be healthy, but you do have worries, thoughts, and feelings about the future right now, and they deserve to be heard out and understood to the fullest for your own health. Do something about it in advance. It isn't selfish - if you are involved in the care of this relative, you need to be able to care about the highest quality you can, which means making sure you are taking care of yourself.

Call the big research hosptials for this type of cancer, and find out the name of patient advocate groups, and people who are allied. These groups usually have conferences, chat boards, email lists, ect. They host them where ever (facebook, websites designed for patients to come together, private websites they built themselves, google groups, what have you, don't expect awesome). They often pass around papers, studies, ect, among themselves. They talk about life issues. They'll be able to share some of the stresses you're going through in ways other people might not.


I don't know anything personally, but I know someone who works at Foundation Medicine. They do genetic-based cancer therapy recommendations based on tumor sequencing. It might be worth looking into.


http://cancerhawk.com/navigator is a search tool to find local specialists for particular cancers types


uptodate.com is a standard medical reference used by many doctors. Perhaps start there?

Warning: it's a subscription service.


Isn't notable labs (yc '1x) working specifically on doing evidence-based prescriptions for GBM?


I'd watch Louis Theroux's "Edge of Life".


anon3315's [oddly] dead comment:

(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.


Thanks. I posted about 1000 words below on this account and signed in on my non-anonymous account and they're completely invisible. I've been on here 4 years guys and just don't really want the world to know I have cancer. So would be nice to at least let it be visible and get downvoted rather than effectively delete something I took a good 20 minutes to write.


Your anon account got hit by a spam filter. Sorry; those are tuned more aggressively for new accounts. We've unkilled its comments and marked it legit so this won't happen again.

We're soon going to release a feature that will allow community members to unkill dead comments, so fixing this kind of situation won't depend on mods happening to see it for too much longer.

The only reason we knew about this to fix it was that a user helpfully sent an email. Please, everybody, follow the guidelines and let us know about problems that way, rather than complaining about them in the threads. It's physically impossible for us to read all the threads.


Thanks.


Mods should probably un-shadowban sibling commenter anon3315.



I've noticed people on HN are quick to punish with downvotes and shadowbanning. Why is that?


People on HN aren't quick to ban accounts, because only moderators can do that and we only do it in egregious cases.

People on HN are quick to conclude that accounts are banned when they're not. That has been a local pastime for years. If some software we've been writing works as intended, though, this will soon change for the better.


1. Lack of time to completely read a comment means that the first few words prominently determine a persons interpretation of a comment. If it is something they disagree with, anger motivates more than positive.

2. Preconceived notions of big pharma.

3. It looks better than black.


> People on HN aren't quick to ban accounts, because only moderators can do that and we only do it in egregious cases.

But that's just not true though is it. :( In the past, rankbans have been given out rather spontaneously it would seem. Even to folks who one would not deem are problematic (like larrys, mindcrime, DanielBMarkham, etc.).

Anyway, it's fine.



This isn't a direct answer to your questions but I hate this disease with a passion and any discussions about mainstream research avenues that ignore other less well-accepted forms of treatment get my emotions in a whirl. (My sister died of brain cancer.)

Please consider researching the benefits of marijuana in your efforts to help your relative. It provides tremendous relief for pain and nausea and cannabinoid treatment causes cancer cells to commit suicide. [1]

My thoughts are with you and your family.

[1] http://valme.io/c/diseases/cancer/52qqs/enough-of-this-nonse...


Hi. I'm a regular here but posting anonymously for privacy reasons. I was diagnosed with Stage 3e Non-Hodgkins Lymphoma earlier this year (about 12 weeks ago). I had to climb a very steep learning curve very quickly and start treatment asap because it's a fast moving disease and early treatment is key. (In my case)

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.


Thanks for sharing your story, this is somewhat comforting. We'll try our best.


You are a mensch for posting. :)




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