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Re: cfoofme post# 294320

Friday, 07/10/2020 1:44:46 PM

Friday, July 10, 2020 1:44:46 PM

Post# of 690787
It’s things like this that remind us of the preciousness and pain of life, as well as how short it ultimately is. I pray that God be with them in this time of need and that they find the strength and clarity of mind to deal with this great trial they face.

Given that their standard options are reduced to a single one, apparently without a lot of hope (though it will buy much needed time), it seems like going outside the box is something to consider seriously. It is a difficult path, with many obstacles, one of which is a lack of time to work through an overwhelming number of options and information. Another is a lack of support to pursue rational options. I hope the following gives them a good start if they decide to leave no stone unturned — something much easier said than done.

The documentary, Surviving Terminal Cancer, provides the rationale behind using existing drugs meant for other illnesses like diabetes, malaria, etc, and repurposing them in a synergistic cocktail against cancer.

https://www.survivingterminalcancer.com

The use of repurposed drugs is being promoted in England at the Care Oncology Clinic. They help patients get the drugs needed for various forms of cancer.

https://careoncology.com/coc-glioblastoma-treatment/

They also are running trials using the approach. They just published (June, 2020) the results of a trial with 95 patients in Glioblastoma in which the use of repurposed drugs in addition to standard of care nearly doubled median survival. I just found this trial result this morning and so can’t comment on its strengths or shortcomings but it is not unexpected, given what we know about cancer mechanisms and the potential for a multi-targeted approach.

https://www.frontiersin.org/articles/10.3389/fphar.2019.00681/full

Quick comment on these kind of statistics. Individuals are not the group. It is incorrect to think “I have x months to live,” though that “x” does give one a read on how serious the situation is. The idea is to do everything one can to “move the curve” in a positive direction as well as increase one’s odds of being in the long survival tail to the right side of the curve. As a simple example, breast cancer patients who exercise have significantly better outcomes than those who don’t. Therefore, time to get moving, even if your oncologist for some mystifying reason is unaware of it or never mentions it. There are many other things like that which one can do to increase the odds.

Care Oncology Clinic’s website mentions that one doesn’t have to be in the UK in order for them to work with you.

Travis Christofferson, author of “Tripping Over the Truth: How the Metabolic Theory of Cancer is Overturning One of Medicine’s Most Entrenched Paradigms,” is heading up a similar clinic in the US that is essentially the US branch of the UK clinic.

https://www.google.com/amp/s/rapidcityjournal.com/news/local/new-rapid-city-clinic-puts-generic-drugs-to-use-to-help-fight-cancer/article_886b650b-a33d-5dcd-9837-03d67d9f93c1.amp.html

https://www.amazon.com/Tripping-over-Truth-Overturning-Entrenched/dp/1603587292

Oren Becher is a specialist at Northwestern who is studying DIPG. He recently mentioned looking at repurposing existing drugs to impact the disease. He might have a new lead or two based on his new research findings on the biology of DIPG.

https://news.feinberg.northwestern.edu/2019/05/mutations-synergize-in-pediatric-brain-cancer/

As an example which supports the overall concept of using existing drugs for diseases other than for what they were originally intended, the approach is being explored against covid-19 by a team of researchers, led by a man who saved his life using a repurposed drug against Castleman’s disease (which induces life threatening cytokine storms):

https://www.cnn.com/2020/06/27/health/coronavirus-treatment-fajgenbaum-drug-review-scn-wellness/index.html

Two additional resources to consider contacting are Ben Williams, prominently mentioned in the documentary. He is known to help patients navigate their options regarding brain cancers and must be considered a world expert on brain cancers at this point. He wrote a book with the same title as the documentary but it is somewhat out of date since he’s survived his terminal diagnosis by 20+ years. There are updated notes online but I would try to contact him directly since he could provide quicker, more targeted advice.

The other resource is Jane McLelland, author of “How to Starve Cancer.” She has overcome two forms of cancer using repurposed drug combinations as well as other approaches. Her perspective seems to be the broadest of all those working in this area while still being as evidence-based as is possible in a world which stands in the way of all options that aren’t patentable. She has a Facebook page with a very active group of followers.

One of the toughest things is finding a doctor who supports out-of-the-box approaches. These resources may be a good source for references to such doctors.



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