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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?

#71

Post by niels_olson »

marckemil wrote: post #55
jeo1234 wrote: post #53

Earlier quoted context omitted.

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

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

#72

Post by dang »

pen2l wrote: post #70

> 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.

https://news.ycombinator.com/item?id=10090474

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

#73

Post by bro-stick »

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

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

#74

Post by bro-stick »

bro-stick wrote: post #73

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…

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...

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

#75

Post by octygen »

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.

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

#76

Post by anon3315 »

dang wrote: post #59
anon3315 wrote: post #40

Earlier quoted context omitted.

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…

Thanks.

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

#78

Post by ekianjo »

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…

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

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

#79

Post by terramars »

ekianjo wrote: post #66
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?

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.

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

#80

Post by sentenza »

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…

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

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