A study from the Netherlands reported the other day that multiple myeloma patients experience low health-related quality of life.

Further, the study says that quality of life (QOL) worsens as time goes on.

As I read the headline for the short study description published in The Myeloma Beacon (“Quality of Life Decreases After Multiple Myeloma Diagnosis for Many ^[1]”), I thought, “Oh those Dutch researchers, they’re such kidders.”

Who else has the time to pluck out 150 or so patients from the myeloma universe and do a bit of prospective questioning about how the patients feel and what’s bothering them.  And come to the obvious conclusion that their QOL often isn’t so hot.

This is one of those things where the answer really didn’t need a question.

If you put any bunch of myeloma patients in a big room and asked for a show of hands from those who think their QOL has declined since they “got” the disease, I doubt there’d be any hands held down.

Don’t get me wrong – it’s nice to have these little statistics, which I’ll get to in a bit – but golly, it must have been a chilly, rainy, boring day in The Hague when somebody came up with the idea to do this bit of research.  Then again, aren’t most days in The Hague like that?

One thing about the study sort of surprised me, where it said that after a one-year follow-up, 74 percent of the patients reported deteriorated scores in health-related quality of life.  HRQOL, as they call it, is a big deal, by the way, in the health care field these days.

I thought, “What, only 74 percent?”

That’s a bit deceiving because QOL is relative, and, besides being what you make of it, it can vary from year to year.

So, I’m not saying that the other 26 percent are liars, but there needs to be some context.  We need to throw some things out to get the real picture.

Take me, for example, when I went into remission. For the next three years, I’d say my QOL went sky high.  No symptoms, no treatments, no side effects.

We all know, though, that remission and myeloma aren’t BFFs (best friends forever) and that nasty old disease-progression guy is always lurking around the corner.

Then there’s those people with indolent or smoldering myeloma.  Probably the only thing affecting their HRQOL is some anxiety about the prospects of progression.  Which may or may not come to pass.  I suppose, too, that anxiety might be more for some than for others, but I’d guess most take that kind of diagnosis in stride and get on with their lives.

The Dutch study was reported online by the European Journal of Haematology as an “accepted article.”  It hasn’t been published yet, but will be.

An interesting finding was about the “most bothering symptoms.”  They were tingling in the hands and feet, back pain, bone aches and pain, pain in the arm/shoulder, and drowsiness.  Also, of the 156 people who completed the baseline questionnaire, 37 percent worried about their future health, 34 percent thought about their disease, and 21 percent worried about dying.

As myeloma patients, I think we all can get frustrated by what the disease and treatment side effects can prevent us from doing.  I get angry sometimes about the loss of strength and energy I’ve experienced, as well as the fatigue that can set in.

I was reminded of this while watching Mick Jagger on the Today show recently.  At 70, the elder Rolling Stone still “moves like Jagger.”  Although that’s really not a fair comparison.  Most of us never moved like Jagger.  My moves, actually, are more like those of the Geico Gecko.

There have been a number of studies over the years about QOL.  Mayo Clinic researchers, for example, reported at the American Society of Clinical Oncology annual meeting in 2008 that, quite simply, cancer patients with a better QOL live longer.

I know that there are those who have just a terrible time with myeloma, and it is greatly debilitating.  Others have to deal with treatment side effects and disease impacts as best they can.  How you cope with all that gets thrown at you by this disease is something that can help with your own QOL.  After all, the alternative is pretty final.

This very specific study from the Netherlands about myeloma and QOL underscores the special category into which myeloma falls.

I think myeloma, and all those diseases that are incurable but “treatable,” as they like to say, are different.

There are those cancers, after all, for which there are “cures.”  They are real cures – and when you are cured, you are really cured.

My sister-in-law has lived like a gazillion years since her breast cancer treatment, and she’s ancient now.  Well, she’s really only a couple of years older than me, but the point is her cancer treatment has allowed her to “live long and prosper,” as Mr. Spock would put it.

Quality of life for myeloma patients is phantom-like, elusive.  So is survivability.  Myeloma patients right now don't have the luxury of possibly getting a real cure, so most don't have the chance to live another gazillion years.

That little fact puts myeloma patients’ baseline QOL at a lower level to begin with.

I might sound like I'm being mean-spirited about QOL studies.  I'm not.  It's just that the research seems to be a lot of talk, and not much action.

Each of my major care providers – my two oncologists, my nephrologist, and my primary care physician – all care about my QOL.  Too often though, there's little they can do to alleviate the causes of a QOL decline or issue.

They spend time trying to figure out ways to alleviate things that are having a bad impact on me.  The medical community is much more aware these days about the importance of HRQOL.  But the answers are quite hard to pin down, and solutions are elusive.

In this little study, the Dutch researchers said they want to see follow-up studies to come up with ways to alleviate what they see as a high symptom burden and low QOL among myeloma patients.

I can help here.  I don’t think that we need another study to know what those ways are.

For one, put me, and others, back in a durable remission where we are symptom free and treatment free.

How about eliminating peripheral neuropathy side effects from treatment drugs?  Get rid of all that myeloma bone pain, the broken bones, the back problems.  These things just debilitate so many myeloma patients over time.

Oh, and just cure the disease, that will take care of everything.

I’m not holding my breath for that.