An oncologist you’ve just met says you have multiple myeloma, an incurable cancer of the bone marrow. He or she reminds you that you aren’t a sta­tis­tic. “With luck,” your oncologist says, “You can live six or seven years — even longer. We should start treatment immediately.”

You and your caregiver frantically hit the Internet, hopefully viewing sites rec­om­mended by your doctor first. Overall survival statistics are all over the map: from three or four years to a decade or more.  Much of the survival disparity has to do with genetics.  Do you have chromosomal abnormalities, such as deletions or translocations, that might make it more difficult to treat you?

Most myeloma patients don’t have such abnormalities – or only have one or two minor translocations – so there’s hope of living eight, ten, or even twelve years.

Once you are diagnosed, the confusion begins.  There are so many therapy options.  Should your doctor use a double (Velcade-dexa­metha­sone or Revlimid-dexamethasone) or triple (Velcade-Revlimid-dexa­metha­sone) drug combination to start treatment?  Should you then get an autologous stem cell transplant (using your own cells) right away, or just harvest the stem cells and wait to transplant?  Or do you head to Arkansas and undergo Total Therapy?

If your genetic profile is a bit more gnarly – making you high risk – should you consider undergoing an allo­geneic stem cell transplant (using donor cells), instead?

No matter what you do regarding the transplant, do you use maintenance therapy? If so, which drug and in which dose?

It’s overwhelming!

Is this the time to be in denial? No way! Now’s the time to be jumping in with both feet in order to raise your myeloma IQ. Where you’re treated, by whom, and with what, can make a difference in how long you live.

When the dust settles, most myeloma patients can live a near normal life for two, three, four or more years.

Then the vast majority of patients relapse. That’s unsettling, but not necessarily bad news. There are so many treatment options at this point, pushing active myeloma back into remission – or, at the very least, long-term stability – is very likely.

Denial isn’t always a bad thing. Without it, one could metaphorically screw themselves into the ground worrying about relapse and what to do about it.

It is perfectly understandable – even advantageous – for patients and caregivers to relax and live their lives during these long remission periods.

However, there is one exception: after more than one relapse. Once you become a late-stage patient, all bets are off. There are no longer any clinical trials to provide your doctor(s) with a road map for what to do next. It all becomes about probabilities and art.

Art? Yes, now you’re at the point that a doctor is treating you more by feel than by relying on available data. Medicine becomes more art than science. Sure, there are individual study results, letting doctors know that a drug may work for a relapsed patient. But there’s no certainty there; the success rates of these drugs run in the 25 to 30 percent range.

Now is not the time to be in denial, cruising along, living one’s life oblivious to the ominous storm clouds on the horizon. Instead, I rec­om­mend sitting down with your myeloma specialist and developing a late-stage treatment plan before you’re too sick to do anything about it.

In other words, time is of the essence, even when you’re still feeling pretty good.

This is where I am in my myeloma journey. Feeling pretty good, but running out of easy options.

Next month, I’ll share my late-stage treatment plan.

Until then, feel good and keep smiling!