I mentioned during my last post that I’m grateful for the advice Susan Steel provided when I was first diagnosed with Stage IV melanoma. As I was running and thinking about this the other day, I realized that the way in which she delivered the information, in hindsight, was also quite exceptional.
For one, Susan never told me what to do. This, as some of my friends and family might surmise, was probably a wise decision. 0-; Instead she gave me a mission which I could either choose to accept or deny; but in either case the phone would self destruct in 5-4-3-2-1.
In this manner Susan led me gently in the right direction and taught some lessons which I still use to this day. I thought sharing some of these ideas might be valuable to my fellow melahomies reading here; or to a anyone facing medical spaghetti junctions in the road.
It was all kind of black hat-ish in hindsight. Susan practically whispered about a paper she’d recently obtained from a prestigious and well attended summit of melanoma researchers and oncologists in Chicago, fall of 2012. I admired her pluck – inserting herself in conferences and conversations where only doctors and phd’s feared to tread. She told me how, in many of these meetings, she was the only patient advocate, sometimes wanted and sometimes not.
I imagine her stepping up the microphone amidst a room full of cold shoulders in white jackets.
“And your name is?”
“Steel, Susan Steel,” she’d say and then lay down a heady dose of common sense or irony designed to make people think…which isn’t necessarily practiced in any professional organization, let alone medicine.
Anyways I had just finished describing my plan which included enrolling in the combinatorial BRAF and Mek inhibitor clinical trial. Susan, in so many words, suggested I might want to reconsider my position.
I thought it was odd how un-enthused she received my plan.
“I’ll send you the pdf, and we will talk on Monday,” she said, “oh and please don’t tell anyone I gave this to you” and hung up.
That was a Friday, the end of our conversation, and though I didn’t know at the time, it was a test.
The paper turned out to be a fat paper of papers, boiling over with a couple hundred pages (at least) of medical jargon… enough jargon to inflict eye-roll-back-disorder and a coma like state of duh, within seconds of reading. But I was “in”, committed, and otherwise motivated. Besides if I could get through Heidegger, Joyce or Foucault or those thousand page engineering books without blowing my brains out (yet), I could do the medical foo too.
There was actually, I found, a certain amount of treasure hunting involved once I got started. As a newbie to that world I didn’t understand all the terminology but wanted to unlock its secrets nevertheless. That meant wading through stuff like this:
…9x11mm ill-defined and spiculated nodule with surrounding ground glass density (aprox 1mm larger than previous scan) in the superior segment of the right lower lobe. Primary differential consideration is primary lung neoplasm although active fungal disease could have the same appearance. Biopsy should be considered. (air bronchograms extend near the margin of the nodule but definitely do not extend through it)…ad infinitum…Cha-Chink-BOOM!
Luckily, most papers in this collection had introductions and conclusions and the conclusion I eventually arrived at was that doing the BRAF and Mek1 targeted therapies was not advised, yet. The melanoma megla-maniac-minds recommended instead, as in my case, that a “low tumor load” (my condition at time) was a better fit for immune therapy. In such cases there was some measure of time to see if the intervention would work. The targeted therapies such as BRAF and MEK1 could, in turn, be kept in reserve as a last ditch effort should the immune therapy fail. As I recall, @ 70% of people experience good results with targeted therapy.
However, after 6-12 months almost all (the paper discussed) patients develop a resistance to the treatment. Even though my original plan was novel, in the sense that they were combining BRAF and MEK1, the collective wisdom was that patients doing this would eventually develop resistance. So perhaps the best course, they suggested, was to go for an immune therapy. These carried a much lower success rate but, when they do work, can result in longer lasting or “clinical” outcomes. If these fail, I could then go with the original plan which had a higher short term success rate but more morbid long term prognosis (Note: new studies have shown that even when somebody develops a resistance to a targeted therapy, sometimes they can be reapplied or re-tried with success; if interested, google “re-challenge” and “braf inhibitor”).
Okay, so if you are still reading and that last paragraph did not cause eye-roll-back-disorder or a catatonic state of duh, what’s my point? The point is being informed was my job. Despite a strong desire to have somebody of authority (Susan, the doctors, Somebody dammit) tell me what to do, I had to make a decision on my own. As I’ve shared/whined in the past it can be agonizing how little doctors actually participate in the decision making process. This seems in direct proportion to the severity of the diagnosis. Anyone that is hoping for a authoritative direction when it comes to dealing with advanced stages of Melanoma may be in for the same comedy of disappointments (kind of ironic or maybe pathetic though that I whine about this when all but stated above I don’t like being told what to do). So, either I could educate myself and try to make the best decision…or not.
But, as Susan guided me and lived her life by example, it was my job alone to do this, 1 billion pages of medical highfalutin lingo be damned;or even the doctors and clinical trial process be double damned for that matter. I mean, some of the same doctors that had signed/contributed/read/reviewed the aforementioned super duper topic secret paper of papers and attended the all mighty seminar, were the same ones who with a straight face recommended that I do the first clinical trial. Sure, do the targeted therapy Monseigneur Guinea Pig, even though we think that immune therapy is probably your better long term option…alright, alright this is getting a little carried away…don’t think there was some mass conspiracy, a plan by the man to keep a poor melanoma patient down. True there are a few idiots and a-holes out there (have had a few appointments with some of them…as someone intimately familiar with idiocy and a-hole-ness, I feel qualified to recognize one…hmmm…feel the topic of my next blog coming on). All rambling aside, there are indeed some serious flaws in the clinical trial process (great blog post on this subject here, see chaotically precise, The Problem with Clinical Trials) and, okay dead horse being beat um deader here, my job is to be in the know bro.
Lesson two came next. I got a list of doctors across the continental US to go see. I didn’t have to see all of them, but at least some were, um, highly recommended. Why? First off, and as I’ve said before as if it were my own (now you know even more that I have no original thoughts), these were melanoma doctors that specialize in melanoma patients using melanoma medicine. Nothing against the vanilla oncologist, but this makes more sense. They are in the game, every day, taking lay-ups, practicing free throws, and hopefully getting in a few slam dunks on melanoma.
What’s more, as Susan taught me, I was building my network of contacts. I might need the full team if I was in the this fight for a long time. And I since found, just as she taught me, that not only was it important to find the right, specialized doctors; but I might need to call or email all those doctors on the list with questions or additional treatment options. Making an appointment and showing up on their doorstep at least once, makes it a lot easier to get a hold of them, down the road, with questions, again. These are some good dudes too and they get back right away; this because all the good melanoma doctors are on major pharmaceutical grade methamphetamines and they don’t sleep (but its okay because, um, their doctors and these specific meds are non addictive, really).
Wonder if I should crank call one of them now?
Or maybe offer a joke?
Joke about NASA, Full Of Bright People
Three men were in a NASA conference room to decide how to spend $10 billion.
“I think we should put our men on Mars!” said the first man.
“Ooh, good idea,” said the other two.
“I think we should put our men on Venus!” said the second man.
“Ooh, good idea,” said the other two.
“I think we should put our men on the Sun!”
“How are you going to do that?”
“Easy. We go at night.”
Anyways, when it comes to medical decisions your mission, or Susan will come back and haunt you up, should you choose to accept is:
- Never tell me what to do… or call me Francis for that matter…or I kill ya. I suspect Susan would have too.
- Be informed, read stuff, even if you are scared or feel inadequate to do so; or, as they advise in other circles, if you can’t do it find a friend who can for you
- Realize I know something about a-holes and might blog about this next, you might want to skip my next post
- Seek out the good doctors and build a relationship or team of them to call on…never know when you need a good post up guy or three point shooter
- Remember that the good doctors take lots of uppers and don’t sleep at night so its okay to email or call them and don’t worry because they are doctors and they won’t get addicted but you will man so like cut that crap out and like ‘Just do it’ …ah, that is, I mean be like Nancy not Mike and ‘Just Say No.’