Myeloma is a heterogeneous disease.  I hear that phrase used often among multiple myeloma specialists.  But what does it mean?

It means that myeloma isn’t a single type of cancer.  It‘s a multifaceted demon, effecting each of us in surprising and unexpected ways.  Researchers now believe that there can even be several different types of myeloma in the same patient.  As you can imagine, this makes myeloma exceedingly difficult to treat; it’s hard to hit a moving target!

Sometimes myeloma affects our kidneys; sometimes our bones.  A large minority of patients remain asymptomatic for years.  Some never develop lesions in their bones.  Others discover lesions outside of their bones, in muscle.

I lost a dear friend to myeloma this week.  He never developed a single measurable lesion.  He died three days after developing pneumonia.

My type of myeloma – IgG Kappa – is very common.  But the way it acts isn’t the norm.

Last week, I fractured a rib getting into my wife’s car.  It wasn’t a complete surprise to me.  I relapsed several months ago for the third time.  After creeping up for a while, my M-spike (monoclonal protein level) was holding steady at a reasonably low 0.6 g/dL.  For the vast majority of patients, a steady M-spike of 0.6 g/dL is nothing to be concerned about.  Many patients live active and near normal lives with M-spikes a lot higher than that.

But my myeloma acts very differently.  For unknown reasons, I start to develop bone lesions once I reach 0.5 g/dL – and this time was no different.  It turns out, my rib cracked because it was weakened by several large plasmacytomas (tumors) growing under my ribs.  X-rays confirmed this, and I started targeted radiation therapy yesterday.

I’m scheduled to undergo a PET scan later today.  I’m calling my shot!  Bet I can tell you what the scan will show.  In addition to the plasmacytomas under my right rib cage, I can feel bone pain high up on my left hip, and deep in my lumbar vertebrae and right clavicle.  Those are new, painful hot spots.  Who knows how many lesions I have in places where I have yet to feel damage?

Three relapses.  Twice before, I’ve developed lesions earlier than expected.  So do you think I was yelling and screaming at my doctors, trying to get them to adjust my therapy so we could get my M-spike back down?

No!  I should have known better.  They should have known better.  But multiple myeloma can lull you into a false sense of complacency.  For three months, my doctors have hemmed and hawed about how to tweak my treatment regimen of once-weekly Velcade ^[1] (bortezomib) and 20 mg of dexamethasone ^[2] (Decadron) for four weeks on followed by two weeks off.

My medical oncologist suggests I try one thing, and my myeloma specialist suggests another.  I want to try a third option first.

So what did we do?  Nothing!

To be fair, that’s not always a bad strategy: milking every last day possible out of a therapy.  Watchful waiting can be a good thing.  But not for me, not once monoclonal protein can be clearly identified in my blood.

I will never make that mistake again.

Next month, I’ll share the results of today’s PET scan and which therapy option the three of us agree on.  In the meantime, here’s my advice:  No matter what treatment decision you and your doctors choose, make it firmly and with purpose.  Watchful waiting is a therapy choice.  Don’t muddle along, waiting to start or change therapies because you or your doctors aren’t sure what or what not to do.  Make the best informed decision you can at the time and then never look back.

Feel good and keep smiling!