Glad to be Wrong!

Scientists are extremely opinionated, despite the occasionally-awkward public attempts to appear to be otherwise. By "opinionated," I mean that we passionately believe something to be true despite lacking proof.  But, as scientists, we want to do the arduous work of designing experiments that would confirm or deny our beliefs. (By the way, in my experience, and able to offer no explanation, scratch a mathematician in particular and underneath you will find a lover of the arts, including poetry. Among the group you will find a fair number of amateur actors. Mathematicians are by far the most emotional people I know.)

On the other hand, scientists are readily-adaptable people. When confronted with a truth that belies their belief, they adopt the new truth as if they had never thought otherwise. Their beliefs change when the facts change, and so do the questions and experiments that subsequently arise.

I passionately believed that my cancer had become resistant to steroid treatments. Not only are steroids the most effective treatments we have (as single agents and in combination with others), but not responding to them is a horrifying prognostic indicator. I've known some who were resistant to steroids from the beginning: they are all dead. When the disease evolves to that point, nothing further is going to be easy. It's a definitive signpost of the endgame.

I had evidence but not proof. When I stopped responding to DVD-R, which includes just about everything we've got including dexamethasone, our strongest steroid, I thought I saw the signpost. That was last May Day. I've had no other good news since July.

But I wanted proof. I had two reasons. Steroids eventually destroy the adrenal cortex, which leads to a life-long need to take low dose steroids. Secondly, high-dose steroids drive most of us crazy to some degree or another, having a profoundly negative effect on quality of life. Quality of life matters, sometimes more than length. I wanted to get off steroids completely, and if they don't work for me, why am I hammering myself with them?

The experiment is easy. Go up to the most-effectively known treatment schedule for steroids for a week or two, then measure before starting any other chemotherapeutic regimen. My cancer number was an astronomical 304. If it went up or stayed the same, it was proof that steroids were of little use to me and I could stop them. My anxiety came from wondering just how much higher the number would go before starting the arsenic.

Instead, as you can see from my partial chart, the number fell by more than 2/3, the most dramatic drop I've ever seen, to 102. The new truth? Weak steroids have no effect on me, and my dose/response effect is not linear (meaning, there seems to be no smooth relationship between response and dose level). Instead, there's a threshold that must be met before seeing this kind of response. The response may or may not be linear with greater or more frequent doses than those effective at the threshold.

One nagging failure of design was that the experiment lasted only one week and confused dosing. On Tuesday, I took 40mg of dex orally (the largest common oral dose we use), and on the following Saturday and Sunday, one dose of 20mg each day (two days a week of 20mg each day is now a common dosing whose effectiveness has not yet been disproved: there is some evidence that higher or more frequent doses produce poorer outcomes).

On the other hand, as a scientist/patient, and having received the first morale-building good news in months, I am filled with hope. Many ugly likelihoods are gone. I have NOT seen the signpost pointing to the end of usefulness of steroids in my disease. I WILL likely make it through January when it is my intention to undergo a potentially life-saving reduced-intensity allogeneic transplant from a matched but unrelated donor (it can also kill me). If the transplant happens, the most likely outcome is at least a few more years of life (albeit with some annoying but likely complications).