After reading this thread, someone emailed me w/a Q.
She wanted to know about good informal (or formal) channels for cancer patients to report alternative interventions that have been successful for them. Any ideas?
cc @gorskon @VinayPrasadMD @RodMakeKidsBald @FayeJohnsohttps://twitter.com/AlanLevinovitz/status/1003284246100881409 …
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Replying to @AlanLevinovitz @gorskon and
I would love to see a registry where these sorts of reports could be verified and recorded. I've proposed this for years, but who would pay for it? Rich people of Twitter - I'd trade a toe to make this my next career.
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Replying to @drbrignall @gorskon and
It would be extremely useful--especially if oncologists registered and submitted opinions at various points during the treatment.
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Replying to @AlanLevinovitz @gorskon and
Sure. There would have to be some sort of verification process - biopsy results, scans, chart review, etc. There is kind of a precedent for this idea: http://www.nwcr.ws/
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Replying to @drbrignall @AlanLevinovitz and
would be interesting- agree that it has to be verified info. Biggest limitation is that many are using these in conjunction with conventional treatments- so hard to tease out what benefit is complementary medicine & what is the conventional medicine. Funding for RCTs needed.
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Replying to @RodMakeKidsBald @drbrignall and
Especially considering the evidence that ~1% of 'terminal' patients survive to 5 years regardless of treatment. It's one of my main concerns about cancer case-reports
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Replying to @GidMK @RodMakeKidsBald and
Exactly, some people have mutations or what ever that we just don’t know about, there are no miracle cures just undiscovered science. We must be VERY careful how we discuss.
1 reply 2 retweets 9 likes
Agreed. I remember seeing a case report of a woman surviving for 60 months with mesothelioma using herbal remedies and homeopathy. It was reported on as a miracle, but it could just have easily been luck of the draw
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