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Ask HN: How to Find the Best Info on Cancer Treatments?

188 points by ekianjo ↗ HN
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!

89 comments

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1qaz2wsx3edc
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.

ska
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.

gus_massa
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.

losvedir
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...

c_prompt
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...

maj0rhn
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.

rokhayakebe
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.
zer00eyz
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!

[deleted]
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Thriptic
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.

mikeyouse
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.

scolson
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.

ciupicri
What's the "Web MD" effect?
shanacarp
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.

bbulkow
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
(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
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.

GabrielF00
Minor correction - that's Brigham and Women's Hospital in Boston, not Boston Women's
JoshTriplett
> 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
> 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
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.

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

Warning: it's a subscription service.

klufas
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

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

Looking forward to hearing from you!

anon3315
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 ...

ekianjo
Thanks for sharing your story, this is somewhat comforting. We'll try our best.
shanacarp
You are a mensch for posting. :)
jaytaylor
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.

anon3315
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.
dang
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.

[dead] noobplusplus
Teach the patient the power of "belief". I am unable to find the exact excerpts online, but there are several stories of belief working wonders, I had come across quite a few of them, in Norman Vincent Peale's book - "The power of positive thinking".

Teach the patient the power of faith.

I know quite a few cancer survivors.

tlrobinson
Mods should probably un-shadowban sibling commenter anon3315.
subliminalzen
I've noticed people on HN are quick to punish with downvotes and shadowbanning. Why is that?
Agustus
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.

dang
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.

[deleted]
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honato11
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

idlewords
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.
najarvg
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.
ggrothendieck
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.
s0lofounder
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...

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