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

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

#81

Post by maj0rhn »

ekianjo wrote: post #62
bbulkow wrote: post #15

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…

> 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,…

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.

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

#82

Post by hokkos »

ekianjo wrote: post #62
bbulkow wrote: post #15

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…

> 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,…

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

http://www.gustaveroussy.fr/

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

#83

Post by shanacarp »

marckemil wrote: post #35

I'm a radiation oncologist. I strongly advise you ask your questions to an oncologist. The amount of information available is simply crazy and "normal people" can rarely appreciate the subtleties of a disease and its treatments. Unfortunately, 10 years of training is impossible to squeeze in a few hours of reading. That being said, Grade IV gliomas are usually being treated with a combination of surgery, radiation an…

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

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

#84

Post by shanacarp »

niels_olson wrote: post #71
marckemil wrote: post #55

Earlier quoted context omitted.

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?

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

#85

Post by shanacarp »

ciupicri wrote: post #54
scolson wrote: post #14

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…

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.

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

#86

Post by shanacarp »

anon3315 wrote: post #18

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 g…

You are a mensch for posting. :)

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

#87

Post by shanacarp »

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.

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

#88

Post by luckydude »

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.

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

#89

Post by niels_olson »

shanacarp wrote: post #84
niels_olson wrote: post #71

Earlier quoted context omitted.

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.

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

#90

Post by klufas »

ekianjo wrote: post #65
klufas wrote: post #17

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…

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

nick@klufas.me

Looking forward to hearing from you!

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