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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?

#32
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 :)

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

#33
post #31

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/

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

#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 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.

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

#36
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.

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

#37

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/2015/0…

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

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

#40

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 an…

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.
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