Ask HN: How to Find the Best Info on Cancer Treatments? • Hacker News Board

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

#61

Post by dang » Mon, Aug 31, 2015, 1:09 AM UTC

subliminalzen wrote: post #38

tlrobinson wrote: post #23

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.

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

#62

Post by ekianjo » Mon, Aug 31, 2015, 1:22 AM UTC

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, but I will try to see what is equivalent there, as well as what medical trials are ongoing in such institutions.

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

#63

Post by Flemlord » Mon, Aug 31, 2015, 1:35 AM UTC

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/

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

#64

Post by wglb » Mon, Aug 31, 2015, 1:41 AM UTC

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.

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

#65

Post by ekianjo » Mon, Aug 31, 2015, 2:16 AM UTC

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).

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

#66

Post by ekianjo » Mon, Aug 31, 2015, 2:24 AM UTC

s0lofounder wrote: post #29

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…

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

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

#67

Post by jskywalk » Mon, Aug 31, 2015, 3:00 AM UTC

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

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

#68

Post by martinald » Mon, Aug 31, 2015, 3:04 AM UTC

salgernon wrote: post #52

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 die…

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

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

#69

Post by martinald » Mon, Aug 31, 2015, 3:08 AM UTC

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

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

#70

Post by pen2l » Mon, Aug 31, 2015, 3:12 AM UTC

> 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.