It's not every day that you get to use a ubiquitous nickname garnered through one's chosen profession to get humor mileage out of one's illness, however imprecisely.
But, that's exactly what happened when my appropriately inappropriate aviator father was diagnosed with embryonal cell mixed teratocarcinoma. He had, oh glorious coincidences, a testicular brain tumor.
There was, apparently, another aviator with this rare breed who flew the same plane (I can't recall now if he was an NFO as my father was). But, since it was on the other side of his brain, they decided there was no connection--presentation matters. The true culprit in my father's case may have been his status as a DES baby. But that's really neither here nor there.
There's a fantastic article over on Science Based Medicine about the misuse of dichloroacetate (DCA) as a cancer drug by patients misled by snake oil salesmen.
To put in simple language, the mitochondria of cells have a couple ways to produce energy: glycolysis or oxidative phosphorylation. There are a few other things that go on in the magical little symbiotic organism inside of us, but this is the key point. Many cancer cells seem to prefer glycolysis. So, in some lab studies, some scientists have tested this simply and cheaply made chemical DCA to see what effects it would have on cancers. In some of these studies, the cancer growth slowed and more cells died. Sounds fantastic, yes? But, the article only cites one clinical human trial... with only five participants, and designed to determine dosing, not effects. This has to come first, of course. The results, Gorski says, seemed suggestive, but more work needs to be done. And more work will be done.
At this point, there's no evidence suggesting this drug is safe or effective. But that doesn't stop those looking to profit off desperate people. With innuendo about "Big Pharma" and lies about the product, sick patients and their scared families are getting sucked into using potentially dangerous off-label chemo therapies and lying to their doctors about it. That makes traditional care they're receiving potentially more dangerous and may undercut their potential success. The truth is, we just don't know yet.
That's a horrible thing to hear. It's also a horrible thing to say. But the horribleness of it doesn't change the fact that anything else is a lie. Unfortunately, sometimes you really do just have to do what you can and accept that we just don't have the answers yet.
My father was in remission when he died. He'd suffered a known, but rare, complication from one of his chemo drugs. Zees one. He died because his lungs stopped functioning. There has been some interesting stuff that suggests that there may be a genetic component to succeptibility to this particular side effect. They didn't know this then. They still don't--as I can tell anyways--have a handle on it yet. Studies take time. Precious time that doesn't make sense to families going through this. But it sickens me that so many people are out to victimize families like mine.
If my father were to have been diagnosed today, his outcome could have been profoundly different because of how much we have learned in the intervening years. That doesn't mean someone was "suppressing" his harmless cure. As disheartening as it can be, we need to learn that sometimes, we can only do so much. Then we need to stick it out and send our kids to school for degrees in science.
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