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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?

#21
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.

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

#22
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.

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

#24
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

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

#25
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…

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.

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

#26
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.

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

#27
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.

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

#28
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.

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

#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 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...

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

#30
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…

Minor correction - that's Brigham and Women's Hospital in Boston, not Boston Women's
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