Birds In Spring: Quality Of Life And Myeloma – Have We All Seen Better Days?
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”), 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.
Lou Ganim is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Dear Lou,
Please, please don't run down this study. I know the results may sound like kicking in an open door, but some patients probably felt that their complaints were 'finally taken seriously'. My husband - who passed away last month after losing his 7-year fight against MM - also frequently complained about bone pain, pain in his shoulders and arms, and a persistent back ache. I sometimes simply didn't know what to do to help him feel a bit better. So, yes, I think some patients like to be heard in the hope that there is someone out there who can help them. And perhaps such a tiny study as the one conducted in the Netherlands may eventually contribute to alleviating people's pains. BTW - The Hague is the place where the war tribunal is located. The fight against MM is also a war, but it's fought at many other places in the Netherlands which does not include The Hague, which does not have a cancer clinic.
Best regards from sunny Netherlands,
Lia
Lou,
Seems you have entered that tough phase of multiple myeloma where you have relapsed after a period remission and are going through a decline in your quality of life and the uncertainty if the relapsed treatments will be effective or bring back or stop the decline in quality of life. I am fortunate enough to be 8 months post SCT and have achieved a complete response with minimal skeletal damage and only mild neuropathy at this time. I am enjoying a quality of life that is nearly as good before the onset and diagnosis of stage III multiple myeloma last April. In some ways it is better in that my RBC is higher than it has been in 5 years and I can feel the difference.
At this point I know it will not last forever and I really have nowhere to go but down from here. This is probably as good as it is going to get for me. I do not think about it every day, but it is stressful knowing that someday, maybe at my next oncology appointment three months from now, or maybe 10 years or more from now, I will get lab results that the disease is progressing again and I will enter the relapse phase which likely will end this golden period of complete remission I am in now. It can be a challenge at times to fight off getting into a depressive mood about this and enjoy the time and quality of life I have.
I do believe that the medical community is working hard to address the challenging issue of improving quality of life with multiple myeloma. I suffered with grade 3 progressing to grade 4 neuropathy with Velcade but since I was on the drug research has found improved ways to administer Velcade to reduce neuropathy. There are other drugs being developed and studied that have reduced side effects drug treatment or to treat the side effects of multiple myeloma itself. I feel progress is being made in these areas.
What I found puzzling in the Netherlands study was that only 37 percent worried about their future health, 34 percent thought about their disease, and 21 percent worried about dying. I thought those number would certainly be much higher and I suspect that for younger patients like myself they probably certainly are much higher. Maybe the low numbers reflect that many people with multiple myeloma are diagnosed at a fairly old age and they may already be suffering from other ailments, already have a significant decline in quality of life, and mentally are in a state to not fight anymore and move on. Then again many young people willing start smoking knowing fully what that leads to, so maybe it is just a matter of only worrying about today, not tomorrow.
Hi Lou, thanks for the article about QOL. I guess that like most issues 'myeloma', it is quite subjective too! That's funny to compare oneself to Mick Jagger. Of all the rock groups from the late sixties, the Stones just seemed to personify crazy risk-taking behaviour, and yet look who still is fit and on top of his finances, etc....Mick Jagger! Whoever would have guessed that 45 years ago?? Life is unpredictable...on the topic of dancing however, I had the pleasure of dancing at a family wedding this month...and guess what one of the new styles is?? You could describe it as the 'geiko gecko' style actually...quite robotic! And yes, due to aches and pains, had to pop Tylenol the next day...just can't keep up with the young folks anymore!
Lou: I have one way that QOL can be improved (as measured on some quantitative scale) personalize the dose to the patient. All of us have different toxicity limits. Let's get get the dosage regimen that maximizes efficacy while minimizing our toxicity. Both Velcade and "low dose" dex are good examples where quality of life can be improved by dosing without sacrificing efficacy. Only after we get the best performance from a drug or combo should we ask the developers for "safer" products.
Hi Lia -- I am sorry to hear of your recent loss. My thoughts are with you. Your points are well taken (except maybe for the sunny comment). I don't mean to sound belittling of the study, because, after all, the data is interesting. But, my point is that we know this stuff without needing to have it verified statistically. Meanwhile, even though we are making great strides, the disease ultimately defies all the efforts for most patients. I could've used Amsterdam rather than The Hague, but then instead of a throwaway line about the weather, just imagine what I might have said about Amsterdam. By the way, I have a couple of friends spending a couple of years in The Netherlands on a work assignment -- they say they'd stay there forever.
Eric -- That's a very thoughtful post. And I hope your remission lasts an extremely long time. I agree that the medical community really wants to do something about the quality of life of myeloma patients. But when I look around and see what so many of those with myeloma confront, I'm less than enthusiastic about the response. I do understand though that it's the nature of the beast.
Seems to me, it's all rather moot & almost ridiculous to conduct studies about QOL with people diagnosed with anything, let alone MM.
Without a diagnosis, ask about QOL & health: oh, I had the flu last month, and arthritis has set in both knees, and I'm having a root canal tomorrow. And death, do you think about it? Sometimes, but in an abstract way. With a diagnosis, we have ills & pains (from treatment side effects or not), and as for death? We're looking into the mirror of mortality. Right now I'm coasting off treatment for 6 months with the MM hovering around 0.8, and I feel absolutely great. So what to do?
Sell some of that soaring Onyx Pharm. stock (carfilzomib) and take a trip far away with the windfall! Couldn't have done it without MM!
Gee....
Hi Nancy...always good to hear from you...and regarding Mick Jagger being in such great shape today -- who'd of thunk it, huh?
Gary -- I think you're absolutely right about personalizing dosage, and I know that this is being done more and more. There's also research going on regarding new ways to attack plasma cells with more than one treatment regimen, but I don't think there's anything that's very far along.
Well said.
Lou,
Interesting column as usual. I think it could be viewed as a positive in the sense that Doctors are at least aware that patients are living longer and that QOL matters. In our little "allo world" this seems to have occured a decade ago. As the non relapse mortality of allo transplants done in first CR got to the very low point they are today, you see references in literature about improving quality of life for the patients that were cured via allo. It has improved greatly. My QOL is great a little over a year out after my allo. I have pointed this out before. The NIH had a study done on blood cancer patients that did T Cell depleted allos that said this:
"Most survivors beyond 5 years had an excellent performance status with no difference in physical and mental health and higher HRQL scores (P = .02) compared with population norms. Although physical and psychologic symptom distress was low, those with higher symptom distress experienced inferior HRQL. These results show that 5 or more years after T cell-depleted HSCT for hematologic malignancy most individuals survive disease free with an excellent performance status, preserved physical and psychological health, and excellent HRQL."
http://www.ncbi.nlm.nih.gov/pubmed/20302959
I realize in the non-allo setting this is probably a ways away, but at least they are conscious of it. It is at least a small step.
Mark
Lou,
You are right. This is one of those questions that didn't need to be answered. Researchers should spend more time on finding a cure or at the very least improving QOL rather than worrying about what patients think about it. It is what it is when you have Myeloma; let's focus on making life the best it can be in each individual situation. Any good dr. will focus on improving QOL issues and curing the disease. We are lucky to have dr.s that do this in our lives. Maybe other patients aren't. Enjoy this day!
Brenda
Rebecca -- Thanks for the kind word.
Mark -- It's great that you had the courage to go forward with the an allogeneic transplant and that it's working out for you...allo risks are so great. But allos are the closest thing there is to a cure. And thanks for the link.
Hi Rebecca -- Good docs work at fixing problems and issues. The key is "good." That all aren't that, and I've had a handful falling into the "not good" category. I had one doctor (who I saw only on a temporary basis) once said to us when we asked about an issue: "You've got an incurable disease. You're lucky to be alive." Well, on the other hand, at least those two statements are true.
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