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Birds In Spring: Your Quality Of Life – Don’t Forget To Live

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Published: Aug 17, 2010 10:22 am

Back in 2006, when I was initially diagnosed with myeloma, I learned of the interest among researchers in investigating maintenance therapies, particularly a Revlimid (lenalidomide)/dexamethasone (Decadron) combination.

This struck me at the time as an encouraging and exciting development, particularly for anyone who had paid attention to how a similar line of research and the introduction of protease inhibitors and combination therapies have changed the lives of many persons living with HIV/AIDS over the past 15 years.

I thought it would be great if someone said to me, “Hey, take this combination of pills indefinitely and perhaps we’ll keep you alive indefinitely.”

Of course, that rather naïve scenario isn’t quite how it’s worked out for a disease that’s as unrelenting as myeloma.

There are a number of options available nowadays to treat this disease, starting at initial therapy – with decisions to be made about how much to treat, when to treat, and, particularly, with what.  When it comes to relapse, the decision can be a complex one for a patient, with a variety of choices on the table, and most myeloma doctors will tell you that figuring out the appropriate course of action for each individual is difficult for them also.

For maintenance, Revlimid is the drug of choice, and is mostly used in a post-autologous stem cell transplant scenario.  In a transplant, you are infused with your own stem cells, which are harvested before you are given, usually, a high dose of chemotherapy designed to wipe out the rest of your body’s stem cells.  Most healthy (a relative term, of course, once disease symptoms have set in), younger myeloma patients are put on course for one, or even two, autologous transplants.  We’re an older group of folks generally, to begin with, and “younger” usually means we’re in our 50s and early 60s.

Two recent Phase 3 trials of Revlimid maintenance have shown that the drug has a remarkable ability to improve what’s known as “progression-free survival,” or PFS – the time during which your myeloma is held at bay.

What these studies don’t show, however, is any real impact on overall survival – not anything statistically significant at this point anyway.

This raises the question of who best benefits from a course of Revlimid maintenance of one, two, or multiple years.

This is important, because there can be a world of difference in quality of life between someone having an extended treatment-free period versus someone who gets a potentially longer disease-free period, but one that is marked by having to monitor and deal with a variety of, say, Revlimid-dexamethasone side effects.  This is a particular consideration if, indeed, in the end your overall survival may be no different.

I asked Dr. Sergio A. Giralt, who recently took over as chief of the new Adult Bone Marrow Transplant Service at New York’s Memorial Sloan-Kettering Cancer Center, about this.  Dr. Giralt feels that the critical decision point is the level of response achieved by a patient after transplant.

The best result is, of course, a complete response, or CR, where the disease has been pushed back to virtually undetectable levels.  For those myeloma patients who have achieved a CR and whose disease is low-risk, Dr. Giralt suggests talking with your doctor about moving forward treatment-free.

“If you have achieved CR, and your myeloma is low risk, you might want to put your hands in your pocket and wait until you see what happens,” he said.

Admitting that we still don’t really know for certain who best benefits from maintenance, he thinks that if you have any sign of disease, or if your myeloma is high-risk, you should probably do maintenance.

According to Dr. Giralt, the equation should be a simple one:  Follow a course of action that provides the longest life, the best quality of life and one which reduces the burden of treatment.

In my own case, despite my own enthusiasm for Revlimid maintenance, the process didn’t like me.  My weakened post-transplant self kept getting infections, including a nasty pneumonia that had me hospitalized for several days.  After that, the decision was no more maintenance, at least not then, for me.

In retrospect, I think that was fortuitous because I had achieved a CR at that point and subsequently had 36 months of treatment-free, progression-free survival.  I can only say that my quality of life during that period was outstanding.  There is much to be said about the “best quality of life” part of the equation Dr. Giralt put forth.

Living with myeloma is difficult.  I don’t talk with a lot of people with myeloma.  We’re few and far between in the real world, and I’m not into organized support groups – that’s just not me.  But I do read a lot of what others have to say, especially on Internet sites, and I exchange occasional emails with some others with this disease.  One of them, treatment- and progression-free for a year now, wrote recently, “I feel great.  But I know it won’t last.”  She went on to say how great her quality of life is again, but admits to being burdened by thoughts of relapse.

I think to myself, yes, she’s right about that.  It’s hard, of course, for most myeloma patients to keep far from their thoughts how this disease is so notorious for relapse.

But, I’m often reminded of Faith Hamer, who works for the Jamaican Ministry of Health, who was diagnosed in 2005, and whom I’ve never met.  In 2007, in a lengthy article in the Jamaica Sunday Observer, she made this comment about living with myeloma:  "I would say what is important is the years that you have here. So don't waste time getting depressed or feeling sorry for yourself.”

I have heard no better advice for someone with this disease.

Dr. Giralt, who has been treating myeloma patients for the better part of two decades, and other myeloma doctors are enthusiastic about the future.  As to the days when he started out, he said, “Back then, few people lived outside of five years.  Now that is common.”

There’s a quote attributed to Martin Luther King, Jr.  While I have often seen it referenced, I never been able to determine when the Rev. Dr. King might have actually said it, so I’m a bit skeptical of its origins.  But it goes like this:

“The quality, not the longevity, of one's life is what is important.”

Unfortunately, this is one of those things that myeloma patients still must all confront.

Quality of life can be expressed in absolute terms – how you really feel physically, mentally and spiritually, and in relative terms – that you are making the best of your circumstances, whatever they are.

Things are getting better, and the day may be approaching when we myeloma patients won’t have to think about balancing quality of life with longevity.  We might be able to have it both ways.

Dr. Giralt feels that already, “If you have achieved a CR and your disease is low risk, there’s a high probability that you will die from something else.”

“I try to avoid the cure word,” he said.  “When you focus on cure, people can forget to live.”

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Photo of Lou Ganim, monthly columnist at The Myeloma Beacon.
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  • Lynda Clark said:

    Great article. I am a five-year survivor (dianosed at the "young" age of 49). I find one of the worst things about this disease is that others (friends/family) can't understand that even in CR, it is hard to "get away" from the disease. I, too, was somewhat relieved when I was taken off maintenance therapy after my two stem cell transplants. I wanted to "get on" with my life; having frequent doctor visits to monitor the side effects of these treatments kept the disease at the forefront of my thoughts. I have recently convinced my doctors to lengthen the time between visits/tests to six months. I no longer jump at the chance to attend every cancer-related activity in the news. I am very close to the point of "almost" (in relative terms) forgetting my disease for long periods of time, but continue to appreciate all the blessings that I experienced during my journey and now experience. In my mind, it is now "when" I retire, "when" I have grandchildren, "when" I will go on vacations with my husband, not "IF". That took awhile to make this transition, but it feels great.

  • Pat Killingsworth said:

    So true, Lou! Don't forget to live! I appreciate your insight and perspective. I'm glad you continue to do so well! Pat

  • Suzanne Gay said:

    I think with any diagnosis we face too extremely our inevitable extinction, a most basic fact of life. Without a diagnosis, we can push this far far back in the recesses of our daily thinking. Yet we don't know that we could be caught by a stray bullet, fall down the stairs, get creamed on the expressway. We are all going to croak one way or another, and don't we fear what happens next, the unknown? I'm currently reading Julian Barnes' "Nothing to be Frightened of." Oddly serious, playful and hilarious. We must keep our sense of humor in all of this!