More and more studies are showing that using maintenance therapy after a patient achieves a complete or very good partial response delays progression of multiple myeloma.

In this case, disease progression is the amount of time it takes for your multiple myeloma to return after it responds to treatment, also frequently called relapse. Maintenance therapy can be used following a stem cell transplant or after using novel therapies during the initial phase of treatment.

The jury is still out whether maintenance therapy can actually extend a patient's life, but delaying relapse is becoming pretty clear.

This should be good news, right? It certainly is good news that using thalidomide ^[1] (Thalomid), Revlimid ^[2] (lenalidomide), and/or Velcade ^[3] (bortezomib) over an extended period of time is now proven to slow the return of multiple myeloma in a majority of patients.

Not so fast, though! Until the use of these drugs proves to extend my and my fellow multiple myeloma patients’ lives, what should we do?

I bring this up because I am hearing from a number of other patients who are resisting this shift to maintenance therapy as an ongoing treatment for multiple myeloma.

Some argue the greater toxicity from extended use equals negative side effects, which can lead to a poorer quality of life. And since it doesn't extend our lives, why take the risk? Not to mention that even with good insurance, maintenance therapy adds to the cost of our cancer treatment.

Others feel maintenance therapy studies seem biased. After all, they are sponsored by drug companies that could profit greatly if this becomes the standard of care.

When I was first treated in 2007, maintenance therapy was new and unproven. The suggestion by my medical oncologist that I stay on Revlimid—whether or not I underwent a stem cell transplant—is a primary reason why I decided not to transplant at that time.

My thinking was simple: Why go through the pain, discomfort, and risks of a transplant if I still needed constant chemotherapy afterwards?

But the choice of whether to use maintenance therapy doesn't just apply to post-transplant patients. Maintenance therapy is also being recommended for those who stabilize their myeloma without transplantation.

When—if ever—can myeloma patients stop their monthly treatments?

And if we choose maintenance therapy, how do we know it’s actually working? Who is to say the myeloma wouldn't have stayed dormant without maintenance?

Despite agreeing with all of the above arguments, I have chosen to stay on a reduced maintenance dose of Revlimid indefinitely—forty months and counting. Why?

First, because my insurance continues to pay for it—at least for now.

Second, although I do have some negative side effects, for me they are a small price to pay for the peace of mind I get, knowing I am doing everything I can to fight my cancer.

Which brings me to my final point: Who among us has the guts and determination to voluntarily stop maintenance therapy, unless there are money or side effect issues to consider? Who is willing to take the chance that their multiple myeloma will return sooner without monthly maintenance?

Some are, and I applaud them. But I guess not me!

It’s no wonder many of my fellow patients resent maintenance therapy. Many resent being forced to make such difficult decisions. They resent the cost, and they resent the inconvenience if they choose continued treatment.

But multiple myeloma therapy isn't like traditional chemotherapy our parents experienced during years past. For most of us, it isn't as toxic or uncomfortable as our fellow cancer patients must endure—even today—when battling solid tumor cancers like breast, liver, and lung cancer.

I prefer to think of this dilemma as a positive one—another treatment option for myeloma patients. Stay on maintenance, or don't stay on maintenance. Do whatever works best for you. Because without clear cut proof that using it extends our lives, this isn't a life and death issue—it’s a quality of life decision.

Feel good and keep smiling! Pat