Earlier this week, I was talking with three other long-lived multiple myeloma survivors who are all in remission.  The fascinating part was that all four of us got there in different ways.

One had undergone a successful allogeneic (donor) stem cell transplant.  He hasn’t been on maintenance for years.

The second was just finishing the arduous, four-year Total Therapy treatment regimen at the University of Arkansas for Medical Sciences (UAMS).  He plans not to use maintenance therapy.

The third started treatment at Mayo Clinic for kidney failure, but then went on to complete Total Therapy at UAMS.  He is also not using maintenance now.

I, too, was initially treated at Mayo Clinic, where I opted to take things slowly – a more incremental approach.  I was able to achieve a complete response after ten months on Revlimid ^[1] (lenalidomide) and dexamethasone ^[2] (Decadron).  So I decided to delay a transplant and stayed on Revlimid maintenance for almost four years.  I later underwent an autologous stem cell transplant (using my own stem cells); however, it didn’t control my relapse.  But a heavy dose of Revlimid, Velcade ^[3] (bortezomib), and dexamethasone did the trick!  Almost six years out, I’m in remission again and back on maintenance.

Total Therapy is no picnic.  Initial treatment with multiple drugs, followed by two stem cell transplants, spaced three or four months apart.  Then UAMS docs hit the myeloma hard again during six months or more of consolidation therapy.  Finally, patients stay on a three- or four-drug maintenance regimen for up to three years.

And undergoing a donor transplant is no picnic either, especially one done a decade or more ago!

My three fellow myeloma survivors may or may not be cured.  But all three have this in common. They endured a lot of up-front risk and discomfort for a possible cure, or at least an extended drug-free holiday.

When I was deciding whether or not to undergo a transplant back in 2007, my myeloma specialist at Mayo, Dr. Zeldenrust, laid-out my decision this way: “Think about it like you are going to pull off a Band-Aid.  You can slowly pull the Band-Aid back, or you can rip it off.  Either way, it’s going to hurt!”

I had chosen to peel my Band-Aid off slowly.  The other three had decided to go ahead and “rip it off.”  That’s where our discussion began.  The premise: Is undergoing aggressive – often difficult and sometimes dangerous – myeloma therapy upfront worth the discomfort and risk?

My hypothesis going into our discussion was that donor transplants or the UAMS Total Therapy approach might be the way to go for a younger, low-risk patient.  And as our discussion died down, I was beginning to think that the answer is YES!  All three were doing well – and not using maintenance.

But then I started to put myself in a newly diagnosed patient’s place.

With so many new anti-myeloma drugs in the research pipeline, why not use the incremental approach – possibly even skipping one or more transplants altogether – relying on a host of new drugs to keep them going until a real cure can be found.

It turns out that there doesn’t seem to be a right or wrong answer. And an hour discussion that we thought would help clear things up did nothing but muddy the waters.

But one thing remained clear:  With so many treatment options available, it is more important than ever for us to become informed patients and caregivers.  We all need to learn as much as we can about myeloma and myeloma therapy.  That way we can work closely with our doctors to develop a treatment plan that works best for us.

Feel good and keep smiling!