Earlier this month, I admitted something that wasn’t easy for me: I’m refractory to both Revlimid and Velcade.

So what’s the big deal?  There are plenty of other drugs I haven’t tried.

True, my outlook isn’t as dire as it would have been three or four years ago.  I recall attending a pre­sen­ta­tion at the American Society of Hema­tol­ogy’s 2011 annual meeting in San Diego. Pomalyst and Kyprolis weren’t approved yet by the U.S. Food and Drug Administration. But a panel of international myeloma experts, including the IMF’s Dr. Brian Durie, French hematologist Dr. Philippe Moreau, and M.D Anderson’s Dr. Robert Orlowski, was very hopeful.

The panel agreed that the median life expectancy for a patient who had become refractory to Revlimid and Velcade was eight months.

Eight months! That event changed my life forever. Ever since, I have been dread­ing the day that I would become refractory to Revlimid and Velcade.

The hopeful part? Those statistics the experts quoted included all myeloma patients, young and old, and with and without comorbidities. They were also prepared pre-Pomalyst and Kyprolis. Still, they got my at­ten­tion!

The doctors excitedly shared how patients refractory to Revlimid ^[1] (lena­lido­mide) and Velcade ^[2] (bor­tezo­mib) had close to a 50 percent chance of responding to one or the other drug.  I took that to mean that one of them was likely to work for me.

They also quoted statistics from early studies that showed Pomalyst ^[3] (poma­lido­mide; Imnovid) plus dexamethasone ^[4](Decadron), or Kyprolis ^[5] (car­filz­omib) plus dex, worked for between 10 and 13 months in patients refractory to Revlimid and Velcade. That’s an eternity in oncology terms! But not if you’re a patient!

I understand that some think I’m a bit too pessimistic and dark. I’ll accept that. But do the math: 13 months plus 8 months is less than two years.

Do you understand now why I have been hung up on the two-year thing for so long? If someone is talking about something more than two years away, I immediately zone out. I’m not interested!

Do I hope to, and expect to, live longer than two years? Heck yes! Those overall survival data I quoted above are medians. This means half of patients in my situation will live longer than 21 months. But it also means half will die sooner.

Now that I’ve scared the bejesus out of you, here are a few things to remember:

• A positive attitude is important. But being realistic doesn’t measurably shorten your life. Sometimes I think that many of us feel it’s bad karma to think realistic or negative thoughts. Not so! There are even studies proving it. What can hurt us is being in denial to the point that we don’t get to the emergency room soon enough if we’re sick, don’t report serious side effects to our doctors, or put off important therapy discussions because we’re afraid of what the doctor may tell us.
• The immunotherapy cavalry is on the way! However, the question remains: will a large enough se­lec­tion be available for me and my fellow salvage therapy patients before it’s too late?
• We aren’t statistics! I’ve got a shot to live for a lot longer than 21 months. But it will take some luck.
• Allogeneic (donor) stem cell transplants are making a myeloma comeback. They are safer, graft-versus-host disease is being minimized, and there is even a chance of a ten-year or longer re­mis­sion. Dare I say cure?

Twenty-one months seem like a long time if my quality of life is pretty good.

What concerns me is why discussing topics like this are taboo? Since when is admitting reality a neg­a­tive? Shouldn’t we be facing our challenges head on and battling like heck — unless we’re tired and don’t want to. Blaming a patient for not being positive enough – or not fighting hard enough – is a pet peeve of mine. It isn’t fair.

To me, being there to support others in the myeloma community is what makes life worth living. I wouldn’t trade a minute of my crazy life with cancer! The friends I’ve made, finding a purpose for living, discovering a love for writing.

Multiple myeloma sucks! But I’ve learned so much about myself and others. We’re a lot tougher than I ever dreamed people could be.

Feel good and keep smiling!