No, I am not regressing to cave man, going all Tarzan, or trying a new paleo diet for English language. If only things were this simple:
Me medicine. Me medicine good. Me want cure medicine Jane now.
Some might say that “neanderthal speak” or the like would be a definite upgrade for 98braintumors.com. I’ll grok on that later…
In the meantime, the more popular terminology for “Me Medicine” is “Pharmacogenomics” or the more palatable sounding “Precision” or “Personalized Medicine,” or PM. It’s something I’m enthusiastic about, at least from a user perspective. In my opinion PM is the future of cancer therapy as long as we don’t screw it up too badly.
Imagine you have recently been diagnosed with cancer. You’re freaked. You’ve done a bit of research on the internet, just enough to freak you out more. The “fight or flight” response kicks into full gear. In a lot of ways you are reduced to a primal, ‘Me Medicine Now Jane’ state. You’re thinking is on par with ‘Ug’ the caveman and you wonder how long until he clubs you over the head and you melt into a simpering puddle of shivering goo. What about your wife and kids? Is it gonna hurt? How long do you have? Wait, does your stomach hurt? Your elbow? What is that in your foot? Have you felt that feeling in your big toe before?
In walks the oncologist. You soon start wondering if he’s framed in an angelic white light or if its just the long coat. That’s because he tells you how extremely lucky you are, that five or ten years ago, he would not have known the exact chemotherapy or immunotherapy, along with the right supporting medicines, to “cure” your cancer. Sure it might hurt a tad when they stick the needle in your arm once a week (poor baby) but man, you are home free. You suddenly find yourself in a world restored to “ah yes” instead of “oh, sh, um, shoot.”
Needless to say, this was NOT my experience. During my visit to the doctor’s office we started with statistics, jumped into disease processes, talked staging info for malignant melanoma, and I honestly can’t remember what the heck happened next. I recall the medical “nerdery” was vaguely interesting in a nice and sterile/non emotional kind of way. But it was by no means the central goal of the conversation as far as I was concerned.
Soon the doctor started pinning treatment options on the statistics- radiation, chemo, surgery, wait and see, clinical trials, immunotherapy, targeted therapy. These things were prioritized and, probably because of my cave man status, moved through my ears in dizzying and confusing sequence. Each course had its positives, negatives and associated risks. Some were more provocative than others. But none were a slam dunk solution. I realized that the doctor was not going to tell me what to do. As much as my paltry research had indicated this would happen, I was still clinging to a #2 pencil sized glimmer of hope that he’d have magic bullets loaded in his anti-cancer Gatling gun.
But wait Doc, so you are telling me that the medicine you are recommending can cause life threatening colitis, hepatitis, dermatitis even toxic epidermal necrolysis, neuropathy, endocrinopathy, and anal-leakage-itis (I added that last one, seems like every rapidly-spoken-disclaimer-on-TV-talks-about-anal-leakage-itis-don’t- you-think?) and, yet, it has a 15-20% response rate. In other words, I might get the privilege of a couple weeks of pure insomnia, fevers, and hives only to find out that the stuff didn’t work and/or my immune system was completely trashed and now cancer could have his/her proverbial way with me? In fact there is a darn good chance (as in a 8 out of 10 person chance) that the stuff ain’t gonna work? Sphincter says what? And this makes sense why?
You know this wasn’t the doctor’s fault. It’s indicative of the state of the fight against cancer. The answers are not yet clear. There is no small box equivalent inoculation. You can’t knock out a tumor with a mouth full or a month full of antibiotics and bed rest (dammit). “It is what it is” and “ain’t what it ain’t.”
But what about, “what shall or could be?”
In the software industry we have a process called “test driven development.” Rather than writing code first, the developer begins by writing the test case (usually automated) which is, at least initially, doomed to failure. But by doing so he/she essentially creates the success criteria for what shall or could be; then writes the code to pass the test. In this sense when you fail you pass. What if there was a similar methodology, “Test Driven Oncology,” that could applied to cancer treatment? Test and “fail” first, then code the prescription, based on the definition of success criteria.
I’ve read somewhere that there are over 1300 different genetic tests on the medical horizon (for cancer and other diseases). Many of these tests- even ones for a full genomic profiling- will be south of $500 dollars (which is BTW, @ 25% less than one of my quarterly scans). There are also companies and clinical trials offering molecular profiling and tumor testing. And companies offering to grow your cancer in surrogate mice (mouse avatars), such that a barrage of drugs can be tested against it, before testing it on you, Mr. Guinea Pig.
I got real close to doing that last one. Had the initial interview. Talked logistics. At the end of the day, I did not want to talk about the money. Thank God I had other options. However, it remains in the category of “last ditch efforts” if I need it.
So what is the point of telling you about all this? Its to provide an outlet by which this data can be shared. I think its important information that people need to know. Personalized medicine is potentially a far more effective medical practice. It is out there and it is growing. Perhaps most importantly, it’s possible that the potential could be realized for you right now. If you have cancer and can afford it, there may be a better way to understand and treat your disease as of yesterday, tomorrow, next week – things are moving that fast around these here parts. If you are taking care of someone with cancer, ditto. Google “precision medicine” or “personalized medicine” + “<insert your cancer type here>.”
If you are running a hospital or are an insurance provider, PM holds cosmic possibilities. I think I read that the average cancer patient costs @ $1M. Just think if you could prescribe a test for $500 which led to a prescription of a $100K medicine and the story stopped there; instead of paying thousands of dollars in scans, followed by successive series of $100K treatments, hospital visits, oncologist visits, specialists and surgeries and hospice as your patients tumble down to the bitter end. Stopping with the one test and the one treatment is not only good for the patients and their families but the bottom line. And what a new, more powerful bottom line that could be! It is the stuff of which Vice Presidents and CEOs are made.
The pharmaceutical companies are already hip to the potential cost savings. Customizing trials to specific genetic defects or vulnerabilities promises to save them years and take big $$$ off the average billion dollar (yes Dr. Evil, that’s “$1 Billion dollars”) price tag of bringing a new medicine to market. In turn, many of the therapies emerging might not cure but instead transform an illness to a “chronic” vs fatal one. Imagine the residual income that could create over the lifetime of a patient population. There are of-course social, political and regulatory hurdles that pharmacogenomics must first jump past.
Finally, if you are thinking about voting in the next weeks, months and years to come, I don’t know what to tell you; nor will I! www.98braintumors.com is not about that, nor will it ever be as long as I’m writing here (and last time I checked, I’m the only one writing here). This site is about sharing my experience, strength and hope to try to help somebody. That said, what I think we should each consider and decide, in light of our own conscience and reasoning abilities, is whether “personalized” and “socialized” belong in the same sentence. I don’t know the answer nor, as I said, am I going to pull the pin on an opinion and toss one out here. If the concepts can play together nicely, great. If they don’t let’s deal with it. Either way, let’s try not to act like cave men when discussing ‘Me Medicine.’