The Experts Say

I quit watching the news on television. I quit because it’s not news; the political hyperbole has gotten too much to bear as pundits whose primary ability is to read a teleprompter are not reporting news but instead swaying viewer opinion. I don’t say trying to sway because they’re succeeding. A lot of people are blindly assuming what they hear is gospel, when it’s simply propaganda and nothing more. Sure, it’s well crafted, but it’s just media outlets telling people what to believe.

The thing is, it’s not just in the news on at 5:30 every night and again at 11. It’s all over the place. I discovered that it’s very difficult to learn things about Multiple Myeloma because everything is focused on the treatments available, as if the only sane choice is to start the cycles of chemo and that’s not true. This is evidenced by the commonality of treatment having no effect, having negative effect, or even proving a fatal choice.

The point is, that a diagnosis of Multiple Myeloma doesn’t necessitate a rush to chemotherapy. When I was diagnosed, my oncologist told me in no uncertain terms that without immediate treatment I’d be dead in six months, perhaps as much as a year if I was lucky. The treatment he started me on, and I blindly accepted, resulted in my immediate hospitalization. The ER doctor made it clear that had I not been brought in when I was that death would have followed a few hours later. My oncologist was undaunted, and told me that many people had a bad first time reaction to this particular treatment and had me repeat it. The result was exactly the same, except that I got to the hospital faster. On both occasions I spent a full week in an ICU ward, and now, almost four years later I’m still suffering from digestive tract damage from the treatments. In discussing the situation with my oncologist, he explained that his recommendation for treatment and his explanation of first time reactions were actually the opinions of his mentors and supervisors, nicknamed The Tumor Board. I found it difficult to fault him because he did the same thing I did. He blindly followed the available information, information issued to attain a particular result. In this case, to put me on treatment with Doxorubicin. It turned out that the leadership of the Tumor Board were actually the designers of the treatment regimen, and as far as they were concerned it was the appropriate treatment for everybody. The expression that ‘to a carpenter the world appears a nail’  comes to mind.

When I had such a violently and near catastrophic result from my initial treatment, both my oncologist and I slammed on the brakes and decided to take a more measured approach. It turns out that he, a hematologist, had just recently taken posting as a VA oncologist and that I was his very first Multiple Myeloma patient. Before you groan too loudly, he turned out to be a pretty good oncologist, once he decided to do his own designing of  treatments, rather than depending on the experiences of others.

There’s a strong lesson in this. That being, what you read and what you hear about chemotherapy may or may not be right for you. Even the medical media has changed it’s tune, playing down the ideas of high dose chemotherapy in favor of lower doses. History and experience showed the same efficacy in lower doses but with lesser dangers from side effects. We are now learning that subcutaneous injection is better in many cases than intravenous infusion. But reading the available materials just a few years back would not give any indication this was so, with the various treatment regimens of chemotherapy in place for so many years.

The smart money is on the branching research happening and challenging the tried and true methodologies, as well as the development of new and better analogs of available treatments. While the effectiveness of therapy is gaining a bit and collateral effects are being reduced, some things about Multiple Myeloma remain essentially unchanged. The statistical data on remission and mortality remain, for the most part, consistent. But smart money is also on more wary approaches to chemotherapy, initiating with lower dosages and increasing them only when positive effect and reduced risk are demonstrated. That, and closer monitoring of patients for unexpected results is becoming commonplace.

There is good reason why cancer victims are now so highly encouraged to participate, and to a degree, lead in their medical care, making the final decisions, after the doctor has made his or her case for their recomendations. After all, the patient has the most to lose when things go awry –and they certainly can, as my case so clearly demonstrated. There is strong reason for old saws and adages like “don’t believe everything you read in the papers.” The motives of the authors is not always altruistic –or based upon certain knowledge. Read everything with a discerning eye and a suspicious nature.

Your life is at stake.