Arnie’s Rebounding World: Thoughts On Quality Of Life
My last column sparked some interesting discussion about the balance between treating multiple myeloma aggressively enough to be effective, while minimizing side effects and maximizing quality of life.
This balance has many facets to it.
Everything in medicine comes down to a risk-benefit question. How much risk is there to a treatment, and what is the expected benefit?
Sounds simple enough. The problem is that the answer is not always clear, especially for any one individual.
Multiple myeloma is a disease with lots of choices and lots of treatment options. For example, newly diagnosed patients have to decide on induction treatment, early or late stem cell transplant, one transplant or two, maintenance therapy or watchful waiting.
The options are daunting. How to decide?
We can look at statistics. Statistics can tell us the percent of patients who will respond to a specific treatment. Statistics can also tell us what percent of patients will have a given side effect.
This is useful information and should aid in trying to make a decision regarding which treatment is best. But what does this really mean?
To any one person, often these statistics may not be very helpful. What if you are one of the 30 percent who does not respond to the treatment, or one of the 20 percent who does get the side effect?
As I mentioned earlier, the question comes down to how people perceive the potential risks and potential benefits of the treatment. Some of this comes down to an individual’s past experience and perceptions about medicine and the medical profession.
Jerome Groopman, M.D., in his book Your Medical Mind: How To Decide What Is Right For You, talks about believers and doubters. Some people are naturally prone from their background and past experience to have more faith in the medical profession than others. Believers are much more apt to follow the recommendations of their doctors. Doubters are more skeptical and questioning.
He also divides people into maximalists and minimalists. Maximalists favor the most aggressive treatments and interventions. Minimalists opt for a more conservative approach.
In the myeloma world, some of these distinctions are quite evident. There are clearly maximalists and minimalists.
The University of Arkansas’ line of thinking favors aggressive upfront treatment with novel agents, chemotherapy, and tandem stem cell transplants, believing that this offers a higher chance of cure or long-term response.
Many other myeloma specialists favor a more measured, stepwise approach to treatment, hoping to minimize side effects, knowing that myeloma can be a long haul.
Because of my background and experience as a physician for many years, I have seen much of the good, the bad, and the ugly that modern medicine has to offer. At the time of my diagnosis, I was also extremely active and otherwise healthy. My natural inclination, based on my background and experience, was to favor a more conservative approach, very much keeping preservation of quality of life in mind.
The goal for all of us with multiple myeloma, of course, is to maximize our chance of successfully treating the disease, while balancing the side effects.
As I said, though, it is difficult to predict what that actually means for an individual. What may be a major troubling side effect for one person may just be a minor annoyance for another. It is almost impossible to predict in advance how much a side effect will bother us. Also not to be over looked is our ability to adapt to changing circumstances and hardships.
The University of Toronto Quality of Life Research Unit defines “quality of life” as the degree to which one enjoys the important possibilities of his or her life. Their quality of life model is based on being, belonging, and becoming: who one is, how one is connected to one’s environment, and whether one achieves one’s personal goals, hopes, and aspirations.
It seems to me there is lots of leeway there. What may be acceptable for one person may not be for another. From my own experience, I can say that what would be considered good quality of life changes over the course of treatment for the disease. As my disease has progressed and treatments have become more aggressive, I am more willing to accept the trade offs. The desire to persevere trumps all.
Arnold Goodman 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 .
Hi Dr. Goodman...nice to read your organized approach to treatments. I have realized from reading and talking to others, that everyone is unique that way. I have trusted my doctors' advice, which was somewhere in the 'middle of the road', when it came to therapy. Even that seemed very intense at times! Hope that your are feeling well, and enjoying early springtime.
I really appreciate and admire your thinking. I have moved from MGUS to SMM with a mixture of dread and resignation. I read about all of the treatments and side effects and try to imagine how it all squares with quality of life. Part of me has decided that I want no treatment, other than palliative. Have you written anything -- or can you point me to a paper, a book, etc. -- that would give me an objective understanding of what I should expect if/when my condition worsens? I'd like to know what to expect if I choose to do nothing.
Arthur
Hi Arthur,
One thing you can expect is excruciating bone pain. Palliative care should help with that in terms of powerful pain killers.
Thanks for your carefully-written thoughts, Arnie. Appreciated, for sure.
You are quite right: one's mindset and life attitude play a large part in how one approaches this disease... my initial reaction of shocked acquiescence to whatever the doctors said soon became much more conscious on my part, and I was fortunate enough to have a team of doctors, nurses, and technologists dealing with me that for the most part was quite appreciative of my attempts to come to personal terms with MM. My oncologist in fact admitted a few visits ago that he looked forward to our meetings, as he was curious regarding the angle I might bring to the table that day (I rarely disappointed him, I think!)
Arthur: I'm I bit confused. Smoldering Myeloma isn't generally treated at all, is it? So I don't understand your interest in palliative care at this time... none would be available, as far as I know, as you are currently considered asymptomatic.
I found this link just now as I was trying to sort out what you wrote... perhaps it will help you. http://asheducationbook.hematologylibrary.org/content/2005/1/340.full
Dr. Goodman: Another great article! You are right when you say a persons perspective on "quality of life" viewpoints change throughout the progressive course of the disease and treatment.
I am soon facing some treatment decisions. Like Arthur, I am uncertain about the choice of treatments - and how far I am willing to go with it. I have other existing medical conditions that complicate matters. It is a hard decision to make. Are there any treatments without chemo - steroids, radiation, blood transfusions, etc.? If so, do they help?
Nancy D there certainly are many treatments available with the newere "targeted " therapies that do not involve chemo, radiation etc. As for how much treatment and the choice of treatment , the point is that these are difficult decisions that cannot be generalized. Everyone,s situation, age, general health, life style is different. Arthur, I certainly would not be an advocate of no treatment when the time comes. I think ultimately the consequences of no treatment would out weight the side effects, but that my opinion. Everyone is different.
Thanks Dr. G, for another balanced and well thought out article! I'm one of those who started out open to the treatment suggestions of my physicians, but became mistrustful after the choices made for me were less than successful. Since then I've been an advocate --often swimming upstream-- against preconceived approaches to therapy. I'm in a whole list of minorities: a non-secretor, overly sensitive to steroids, and a side effect magnet. Caught up in a system that endeavored to paint all patients with the same brush, I grew very disenchanted. I have coined the phrase 'bandwagon therapy,' which I think is deeply seated in not only many oncology professionals, but in we patients as well. I can't count the number of comments my blog has attracted where the writers read of my difficulties and then asserted some particular treatment approach that includes compounds I just explained did me harm. In the VA system we have some wonderful people, but as I have been referred to various specialists in the field because of the peculiarities of my case, it's surprising the number of them which brush aside my history and advocate a repetition of it.
I'm wholehearted in my agreement with what I believe you're saying; my question is, how do we get past the carpenters who see all the world around them as just another nail? I believe that all treatments should be conservative, even tentative, and specifically customized to each patient. This, as much as science and research, would I think, reduce the discomforts and trauma involved in therapy. This producing a higher quality of life for Multiple Myeloma victims.
Bob, I share your frustration. Doctors tend to do what they do, and what they are most comfortable with. Except for a very few I have come across It is very difficult to get "out of the box" thinking. I only know that the best you can do is arm yourself with as much information as possible, and in a respectful way always be ready to advocate for yourself. Its your life not theirs.
Thank you for reminding us that "It's your life not theirs." Having had to go through this with my husband since his diagnosis in October it is very clear that you can take what the doctors suggest, but in the end, you really need to look at your situation and decide what is best for you. At times it is very difficult, but as you stated, the more information you find the better off you will be when it comes down to make an informed decision.
I was diagnosed December 20, 2011. I have had my humerus replaced by plates, " cement", and pins. I have had 5 courses of radiation on 5 different areas, I am heading into my 3rd course of chemo, and I am trying to wrap my head around all of the treatment options. It has all happened very quickly and now that the arm issues are being dealt with I am taking time to really look at all my options. This is a great place to hear what other people's experiences are.
I am looking at my diet while on Velcade, pamidronate, dexamethsone, and an antiviral. I have been advised to not take vitamin supplements and to stay away from antioxidants. It flies in the face of how I have eaten for years...so I want to eat well but not impede my progress with the treatment. I have been a very compliant patient, because I was in pretty dire circumstances with my arm. Now I would like to become more of a participant in the decisions, rather than a recipient of treatment. I am 55 and have had to stop work for what I, hope will not be forever.
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