My last column sparked some interesting discussion about the balance between treating multiple myeloma aggressively enough to be effective, while minimizing side effects and maximizing quality of life.

This balance has many facets to it.

Everything in medicine comes down to a risk-benefit question.  How much risk is there to a treatment, and what is the expected benefit?

Sounds simple enough.  The problem is that the answer is not always clear, especially for any one individual.

Multiple myeloma is a disease with lots of choices and lots of treatment options.  For example, newly diagnosed patients have to decide on induction treatment, early or late stem cell transplant, one transplant or two, maintenance therapy or watchful waiting.

The options are daunting.  How to decide?

We can look at statistics. Statistics can tell us the percent of patients who will respond to a specific treatment.   Statistics can also tell us what percent of patients will have a given side effect.

This is useful information and should aid in trying to make a decision regarding which treatment is best.  But what does this really mean?

To any one person, often these statistics may not be very helpful.  What if you are one of the 30 percent who does not respond to the treatment, or one of the 20 percent who does get the side effect?

As I mentioned earlier, the question comes down to how people perceive the potential risks and potential benefits of the treatment.  Some of this comes down to an individual’s past experience and perceptions about medicine and the medical profession.

Jerome Groopman, M.D., in his book Your Medical Mind: How To Decide What Is Right For You, talks about believers and doubters.  Some people are naturally prone from their background and past experience to have more faith in the medical profession than others.  Believers are much more apt to follow the recommendations of their doctors.  Doubters are more skeptical and questioning.

He also divides people into maximalists and minimalists.   Maximalists favor the most aggressive treatments and interventions.  Minimalists opt for a more conservative approach.

In the myeloma world, some of these distinctions are quite evident.  There are clearly maximalists and minimalists.

The University of Arkansas’ line of thinking favors aggressive upfront treatment with novel agents, chemotherapy, and tandem stem cell transplants, believing that this offers a higher chance of cure or long-term response.

Many other myeloma specialists favor a more measured, stepwise approach to treatment, hoping to minimize side effects, knowing that myeloma can be a long haul.

Because of my background and experience as a physician for many years, I have seen much of the good, the bad, and the ugly that modern medicine has to offer.  At the time of my diagnosis, I was also extremely active and otherwise healthy. My natural inclination, based on my background and experience, was to favor a more conservative approach, very much keeping preservation of quality of life in mind.

The goal for all of us with multiple myeloma, of course, is to maximize our chance of successfully treating the disease, while balancing the side effects.

As I said, though, it is difficult to predict what that actually means for an individual.  What may be a major troubling side effect for one person may just be a minor annoyance for another.  It is almost impossible to predict in advance how much a side effect will bother us.  Also not to be over looked is our ability to adapt to changing circumstances and hardships.

The University of Toronto Quality of Life Research Unit defines “quality of life” as the degree to which one enjoys the important possibilities of his or her life.  Their quality of life model is based on being, belonging, and becoming: who one is, how one is connected to one’s environment, and whether one achieves one’s personal goals, hopes, and aspirations.

It seems to me there is lots of leeway there. What may be acceptable for one person may not be for another.  From my own experience, I can say that what would be considered good quality of life changes over the course of treatment for the disease.  As my disease has progressed and treatments have become more aggressive, I am more willing to accept the trade offs.  The desire to persevere trumps all.