[roberte3]

I have a really rare cancer, and it didn't get detected until I hit stage IV and it started shattering my bones. Thankfully I lived 2 miles from a cancer research hospital that actually has a specialist in this type of organ cancer.

My current treatment regime is based on a research paper. My insurance initially denied me treatment based on "an expert in the field" and stupidly listed the doctors name. I looked her up and she was a podiatrist...

For the most part, my treatment is dialed in and mostly working. But I had a solid three months of fighting with the insurance company to get all of the medications, and I do the monthly phone calls to three different specialty pharmacies to get all of the various things that keep me able to walk.

Its a crazy hard problem because one of my medications is a "failed" cancer drug. Tens of millions of dollars worth of R&D, several clinical trials, and it turns out it doesn't work on most common cancers. (And even on cancers it does work on, its usually used as a Hail Mary play, at EOL because it might give someone a few more weeks, maybe). It costs roughly 40k a month, and I might be stuck on it for the rest of my days.

[Scoundreller]

Anecdotes are great and all, but we still don't know if the textbook treatment would have worked better or not.

Certainly those that failed with the exotic treatment plans won't be around to complain about it.