We Don’t Treat Multiple Myeloma. We Treat People.TreatmentApril 2020By: Joseph Mikhael, MD, Chief Medical Officer, International Myeloma Foundation
We don’t treat multiple myeloma, we treat people. This may seem obvious, but you’d be surprised that treatment decisions are often made without listening to and truly understanding what’s important to people living with multiple myeloma.
Joseph Mikhael, MD, Chief Medical Officer, International Myeloma Foundation
The options for multiple myeloma treatment have increased dramatically over the past two decades. When I first started seeing patients in 1999 there were very few therapies available. It was disheartening and frustrating when a patient’s disease progressed after initial treatment, without having additional treatment options to offer.
Thankfully, the treatment landscape is radically different today and patients are living longer and healthier lives. There are several options available. In fact, multiple myeloma is now rarely treated with a single medicine. Treatments are often used in combination.
Because of this, it’s more important than ever that decisions on which treatments are best for each individual patient are made jointly by the doctor and the patient. While I may know the most about available treatment options, a person living with multiple myeloma and their family know most about how they want to live with and manage their disease.
Listening and Understanding as a Physician
We are all individuals, and deserve to be treated as such, particularly when it comes to managing our health. My role as a physician is not just to learn about disease history, health status, and past treatments, but also to understand what’s important to the people I treat.
I want to know how they feel about their disease, what their past experiences with previous treatments have been, and how managing their multiple myeloma fits into the wider context of their everyday lives. I appreciate when patients feel empowered to share this with me. Those conversations help us create a plan for managing multiple myeloma together.
Becoming an Empowered Participant in Your Own Health
Feeling empowered in a healthcare setting is not always easy, but it’s fundamental to the process of shared decision-making. There are a few things I have observed in my years of working with multiple myeloma patients that can help people take control of managing their illness.
Keep track of what’s going on in your body. Whether you’re in remission or have active disease, it’s important to familiarize yourself with the tests your healthcare team may use to assess the status of your multiple myeloma. These include blood and urine tests, bone marrow tests and imaging studies. Beyond being familiar with the tests, it’s also important to request and collect the results for future reference. These data can show a trend or pattern in your disease over time and provide your oncologist with critical information that they can use to make more informed recommendations.
Define your goals and priorities. I want my patients to tell me what they most want to accomplish. This goes beyond improving blood cell counts. I want to work with my patients, as much as possible, to find a management strategy that will allow them to continue the everyday activities that bring them joy and happiness. Every patient is different, so this could include anything from playing with grandchildren, continuing to work fulltime, or taking part in a pickle ball league. Understanding each individual’s life priorities and goals, as well as identifying any concerns, can be incredibly valuable when determining the best treatment approach for them.
Build two-way trust and communication with your healthcare provider. The hallmark of any good relationship is trust and communication, and this holds especially true for the relationship between you and your oncologist. This goes both ways. I want my patients to trust that I’m working in their best interest based on the information I have available, and I want to trust that they’re being open and honest with me. In building this trust, you might find it beneficial to see another specialist to get a second opinion. I am never offended by that and encourage my patients to do so. Ultimately you own your disease and need to have trust and belief in the care you are receiving.
Become educated and informed about multiple myeloma treatments. A final piece of advice that I often give patients is that knowledge is power. Although I can provide you with my expert opinion, you should educate yourself about multiple myeloma and the many treatments options available. In my experience, patients who are better informed and engaged tend to feel more empowered. Reading through Myeloma Explained is a good starting place. If you want to dive deeper, check out the patient advocacy organizations, such as those listed on the resources page, which includes The International Myeloma Foundation, among others.
I encourage anyone living with multiple myeloma to take the above steps and to speak openly with your oncologist or hematologist so that they can better understand your personal situation and you can work together to manage your disease. You can also speak to your oncologist or hematologist for more information about multiple myeloma.
About the Author In his position as Chief Medical Officer with the IMF, Dr. Joseph Mikhael works to advance the mission of the organization in research, education, advocacy, and patient care to improve lives of people living with multiple myeloma. Dr. Mikhael also remains in academic and clinical medicine.
Dr. Mikhael is a paid spokesperson for Amgen.