In last month’s column ^[1], I wrote about how much my perspective on myeloma therapy has changed over the past six years since my diagnosis.  In a nutshell, I’m more willing to try new things and endure troubling side effects now than I was back when I was still a “rookie.”

My attitude about stem cell transplants is a perfect example of this.  I look at stem cell transplants differently now – both allogeneic transplants (using donor stem cells) and autologous transplants (using my own stem cells).  Not only would I be willing to undergo a second or even third autologous transplant if my doctors felt it was worth a try, I would even consider a donor transplant somewhere down the line.

Considering I started out doing anything I possibly could to avoid transplants of any kind, that’s quite a ch-ch-change.  All of which raises the question, “Why?”

After all, I was deathly afraid of stem cell transplants when I was first diagnosed back in the spring of 2007.  Mayo Clinic had just started allowing patients to harvest their stem cells and wait to transplant.  I lobbied hard and eventually wore my doctor down.  My cells were harvested after four months of initial Revlimid ^[2] (lenalidomide) plus dexamethasone ^[3] (Decadron) treatment.  Ten months later, I achieved a complete response that lasted three years.

Like so many patients, my first relapse was tough to take.  And after my first autologous stem cell transplant two years ago didn’t work – and actually made my myeloma worse – I understandably panicked.

Attending the American Society of Hematology meeting and listening to myeloma specialists quote statistics about how relapsed/refractory patients often live less than one year after Revlimid and Velcade stop working for them didn’t help.  That wasn’t an easy thing to hear!

I was instantly transported from the ‘Myeloma therapy is inconvenient’ group to the ‘I’m scared out of my mind and I’m willing to do anything to live!’ club.

Stem cell transplants are never any fun, even under the best of circumstances.  But when compared to dying, I’m more than willing to do it again if a transplant can buy me precious time.

A little over one year ago, two of my good friends, fellow Beacon columnist Arnie Goodman and 20-year myeloma survivor Jim Bond both began preparing for donor transplants; Arnie’s was a desperate, last-ditch effort to stay alive, and Jim’s was to hopefully nip a developing case of myelodysplastic syndrome ^[4] (MDS) in the bud.

I understand how risky undergoing a donor stem cell transplant can be.  And often they don’t work well.

Even though Arnie’s doctors weren’t enthusiastic about using a transplant to treat such advanced myeloma, he tried it and is still alive today, one year later.

Jim is doing very well, too.  As a matter of fact, his donor transplant seems to have helped knock his myeloma back along with his MDS.

I want to pause here and caution my readers not to get too excited about all of this.  Arnie is the most deter­mined patient I’ve ever met, and Jim is as tough as they come.  But I think I’ve become pretty tough over the years, too.  And my body isn’t as beat-up as Arnie’s or Jim’s were when they decided to “go for it,” emerging alive and (relatively) well on the other side.

It takes determination and more than a bit of luck to survive and thrive following a donor stem cell trans­plant. I’m not sure I’m ready to take that risk yet.  But once a few more therapies fail for me, I say bring-on the chemo or whatever it takes to knock down my myeloma enough to try either an autologous transplant, donor transplant, or both.

I’ve got so much to live for, so much to do before I check-out.  I understand how important quality of life is for so many of my fellow myeloma patients.  But I may be nearing the point where I need to “toughen up” and let my doctors have their way with me!

Now before you start commenting furiously about how I shouldn’t have to contemplate therapy solutions as drastic as another autologous and/or donor stem cell transplant, I realize that with any luck at all, the tried-and-true combo of Velcade ^[5] (bortezomib) plus dexamethasone should continue working for me for months – and hopefully years – into the future.  At that point, Kyprolis ^[6] (carfilzomib) and/or Pomalyst ^[7] (pomalidomide) may work for me, too.

Don’t think for one minute that I don’t appreciate every waking hour I’m “only” being treated with Velcade and dexamethasone; most of the looming alternatives are a heck of a lot worse.

And I also understand that some patients chose not to aggressively treat their multiple myeloma.  For them, quality of life trumps a few more months – or even years – of being over medicated and feeling lousy.

I get it!  I’m not trying to be a “Debbie Downer” here; I’m simply being realistic.

Myeloma can morph and change on a dime.  Seemingly overnight a mild and easy-to-treat case can become unrelenting and virulent; I’ve just witnessed it happen to an old friend back in Minnesota.

Remember my battle cry?  Become an educated patient!  Here’s wishing all of us a soft landing.  May we never have to face any of these tough decisions!  But difficult or not, understanding your options – and based on what I‘ve written here today, I‘m tempted to add, “and toughening-up” – could add precious months or even years to your life.  For me, I’m willing to feel a bit uncomfortable in order to gain that extra time.

Feel good and keep smiling!