By the time I learned I had multiple myeloma, I was really sick.  Bedridden from a fractured vertebra and high on narcotics, everything seemed surreal—like I was in a fog.

Sure, I searched around a bit online for information.  But there weren’t as many good sources of info four years ago as there are now.

But even with newer sources of information, there are a number of barriers that slow patients from getting up-to-speed and learning as much as they can about multiple myeloma as soon as they can.

This is unfortunate.  The first few months after diagnosis can be critical to a multiple myeloma patient’s future.

As more treatment options emerge, oncologists have an ever-widening array of therapy options to choose from.

This makes it even more imperative that a newly diagnosed patient seek counsel from at least one experienced myeloma specialist.

But even this may not be enough.  Like many areas in medicine, multiple myeloma specialists don’t always agree on the best way to treat someone.

I’m constantly amazed at how many different treatment approaches there are, not only in the United States, but internationally as well.

The most important decision has to do with when to start treatment.  Sometimes the decision is clear-cut.  If a patient’s kidneys are failing or bones are crumbling, immediate action is required.

But often this isn’t the case.  A patient’s protein counts may be rising, but without any measurable effect on their bones or kidneys.  What then?

At that point, watching and waiting can turn into a nerve-racking game of chicken.  Often the patient and/or physician want to jump in and begin treatment immediately.

NOT SO FAST!  Unlike a lot of other cancers, it doesn’t necessarily help to start treating multiple myeloma early.

Once diagnosed, the patient should be carefully watched for symptoms.  But does fatigue alone necessitate treatment?  How about one or two bone lesions?

I try and visualize multiple myeloma therapy as a way to stretch time.  Once the myeloma therapy “timer” starts, there is a finite amount of time that existing therapies will work.

Delay starting the timer and, theoretically, a person can live longer.

OK.  Let’s jump ahead and assume a patient has reached the point where treatment is necessary.  Now what?

How does a patient and their oncologist decide on where and how to begin treatment?

The “where” should be easy, right?  Isn’t your oncologist going to treat you?

Maybe yes, maybe no.  There are several different philosophies emerging for treating newly diagnosed, low-risk patients.

The standard of care is induction therapy, often followed by a stem cell transplant.  But the University of Arkansas for Medical Sciences myeloma group advocates a much more aggressive approach called Total Therapy.

Total Therapy includes tandem transplants (two transplants spaced around four months apart), sandwiched by an aggressive induction and maintenance therapy approach.

This combination of tandem transplants and aggressive chemotherapy is achieving some exciting, long-term remission rates.

Conversely, some patients are choosing to forgo a stem cell transplant altogether, instead using a combination of new, novel agents to hopefully coax the myeloma into submission.

An oncologist is left to choose from lots of different approaches and different choices, involving when to start therapy and what drugs to use.  Do you really think it is a good idea to leave such decisions up to your well-meaning, yet often inexperienced local, medical oncologist?

NO WAY!  A second opinion prior to any major therapy decision is always a good idea—but especially for a newly diagnosed patient.

These are decisions best made by a team composed of a well-informed patient and caregiver, a local medical oncologist, and a myeloma specialist from a cancer center that specializes in treating multiple myeloma.

In a perfect world, an additional opinion from another specialist who approaches treatment from a different angle is an even better idea.

I understand this is difficult.  So much to learn in so little time—and before everyone has a chance to get their sea legs under them.

But think about what’s at stake.

It may take a few extra weeks to start getting a handle on all of this.  But fortunately, a majority of patients can afford to wait a bit while they decide what treatment regimen works best for them.

Taking a step back to learn about your cancer—and to find one or more specialists to aid in the decision-making process—is time well spent, in my opinion.

This is your life.  Taking responsibility for the direction of your own care as early as possible could actually help you live longer.

Feel good and keep smiling!  Pat