I spent an hour or so browsing the web in search of multiple myeloma articles. As I was surfing about the waves of data ebbing and flowing past my screen, I realized that I was seeing three words used with remarkable regularity. The words are
May Be Effective
I realized that in the attempts to be positive and encouraging, many writers were actually being kind of lazy. There are lots of adjectives which might be substituted for the root word “possible.” but not many were out there looking for them. For some reason it made me think about hugging. As I grew up, polite society reserved hugs as a form of intimate contact, reserved for only the closest of friends, or better yet family. A peck on the cheek was equally frowned upon. I’m certain that this dates me as something pre-Cambrian and possibly even Jurassic, but then again my children circled me one morning and asked me what dinosaurs looked like in person. When I objected to the insinuation of my antiquity, they immediately set out to make me feel better by creating a list of things older than me. The first item was dirt.
But I digress.
The number of times I see headlines or body text which contains the three words boldly inscribed above is actually kind of remarkable, and causes me to believe in the multitude of possibilities implied. I have concluded that broken glass may be effective in reducing the progression of cancer, as might be plastic tie wraps and elephant dung. The fact is, that anything that May Be Effective has a fifty-fifty chance of May Not Be Effective. In short, the articles which use this turn of the phrase aren’t really saying very much.
The thing is, I have seen articles which have said that Doxorubicin may be effective in killing the cancer cells of some patients. My own personal experience with the compound demonstrated that it certainly was. The next thing I learned was that it was even more effective in killing my healthy cells, devastating a lot more of them than it did the intended target. As I consider this, I can only assume that the possibility of what happened to me probably never made it into the text which gave rise to its positive possible outcomes. Just the other day I was visiting my new oncologist and he noticed my tee shirt proclaiming “Doxorubicin Sucks.” Asking where he could get a shirt like it was the second question he asked. The first one was, have you had your heart examined for damage? Thankfully I could answer in the affirmative, in fact, my exposure to Doxorubicin, or “the Red Death” as it is also referred, has caused a long line of physicians to send me for cardiac testing. All of it proved positive I’m happy, and here, to say.
But I think I’ve made my point here. We should take a lot of what we read with a grain of salt. Absolutely nothing in the arsenal of anti-cancer weapons can stand up to blanket statements. We are all like little snowflakes, each of us with special ingredients in our body fluids and compounds that make us individual. While our own cancer cells may be rubber stamped from the same pattern, that’s about the only thing that is. Out of fairness, considering how often we see how this or that thing may be effective in some people, we should be seeing equal time given to this or that thing not being worth crap in some people as well.
The truth is, it’s not very common to see followup articles on research that was promoted as showing promise but turned out to be a dud. For that reason, I tend to read with a prejudiced and jaundiced eye as I tour the happy little glades of medical promissory notes littering the media. For the most part, I want to learn the names of things being tried, what their methodology is, and what stage of research they’re in. Until anything passes at least two human trials, I refuse to take it seriously. The reason I wait for two trials to go by is that the first one establishes a possibility of viability and the second one confirms or denies the results of the first. Even then I’m not ready to jump on the bandwagon, I’m simply willing to listen. But as I do, I expect to hear about both the positives and negatives. Then I like to see some time go by just in case there’s a delayed reaction to a given candidate treatment. It’s not unusual to hear that a year after successful trials were completed, that some percentage of the patients in the study groups suffered organ failure or some other tragic consequence.
On the whole, much of the medical writing is too cavalier for my tastes. Then again, I am vehemently against the advertising of prescription drugs to the lay audience. Even those of us who try to be apprised of our conditions and the treatments available aren’t qualified to be flat out telling our doctor that we want to try this or that remedy. Better we ask them which ones are available, and then have discussions about the pros and cons of each as they relate specifically to us. I am fervently in favor of patients participating in the strategies of care that apply to them, but not to dictate what that care should be. I personally think that the idea of marching in to your oncologist’s office and declaring that you will be starting RVD pretty much eliminates the whole idea of having an oncologist at your disposal. Asking your doctor if the RVD combination is appropriate is a legitimate question. Yet I have listened and read as multiple myeloma patients have said how they told their oncologist they wanted this or that therapy, and when the physician showed reticence, they bragged that they found someone who agreed with them. There are good reasons to change oncologists, but questioning a patient’s ideas on therapy shouldn’t be one of them. Especially because they were led to believe in a panacea of wellness that said their chosen therapy May Be Effective.