Guest blogger Yelak talks about leading and directing your medical team
Who is Goliath? Goliath, in the Bible, was a giant who couldn’t be defeated because of his huge size and power. In our world of myeloma today, Goliath is the might of medical care, medical insurance, treatment options, clinical trials and all the daunting tasks of living and dealing with myeloma.
You and I, the myeloma patient or family members, are David. Unlike the story in the Bible, if we go up against Goliath one on one we’re likely to be flattened. So, we don’t do battle with Goliath; we learn to deal with Goliath. Over the last 20 years, since I was diagnosed with myeloma at age 25, I have just done that. Let me note that I am not a medical professional. I am a patient and would like to be considered a “customer” of Goliath.
When I was first diagnosed, I hadn’t even heard of multiple myeloma. I almost certainly didn’t have any idea about what treatment would be best or even what the options might be. Even physicians who come to our support group diagnosed with myeloma rarely know much about the disease -- at first. Thus, initially, I relied on what my oncologist/hematologist said I must do. Before long though, I became educated enough to form an opinion about the treatment I wanted.
Doctors are trained to take charge, and most patients, alas, don’t really want to know much. They just want to be fixed! But, if you want to lead and direct the medical team that “fixes” you, here is what I think you should do.
First, you need to become as knowledgeable as you can about your disease and treatment options. Knowledge is your primary requirement. In order to be able to participate in decisions with your doctor, you must gain knowledge and, thereby, credibility. Whenever I say “you,” I mean the patient, or the caregiver, or a family member. That is a daunting task, or so it would seem at first, but you don’t have to “reinvent the wheel.” You can learn much more quickly if you connect with those who have already done that work. Your local myeloma support group will have lots of experience, with both scientific information and experiential knowledge. There is also a wealth of information available on social media and through organizations such as The Leukemia & Lymphoma Society (LLS), the International Myeloma Foundation (IMF), the Multiple Myeloma Research Foundation (MMRF), the Myeloma Beacon and many others.
Your Medical Team
Second, you need to form and lead your medical team. Your medical team should consist of your primary care physician, your local oncologist, your myeloma specialist, and any other medical care personnel who can deal with issues you might have. But the leader of the team must become YOU. You may need the advocacy of family members or friends, but you should be the one deciding on the direction and extent of medical treatment.
Some doctors don’t want to follow your rules and don’t want to be part of your team. That is when you change doctors if you can. Changing oncologists can be traumatic, but it may be imperative, in the long run, if you are to get the best care. Find someone who will listen and allow you to be not only a member of your medical team but the leader. You must have the veto power that will ensure your quality of life as much as treating the myeloma
Do not change oncologists, however, just because you are miserable in the early stages of your treatment journey. All treatment involves some level of misery because we do not yet have treatments that target ONLY the myeloma cells. But you need to know the PLAN that your hematologist envisions. How long will treatment last? What tests will show the progress (or lack of it) and how long must you suffer before seeing progress? If this is Plan A, what is Plan B, Plan C? What supportive care will be done along with treatment (for example: pain control, bisphosphonates, chemotherapy, novel therapy and radiation symptom control)?
Third, look into the future. If one has to have this horrible cancer this is a great time to be diagnosed as there are a lot more choices than when I was diagnosed almost two decades ago. In the last 12 years, more than half a dozen new drugs have been approved for the treatment of myeloma and several promising medications are in the pipeline.
Great progress has been made and we are at an edge of an industrial revolution for myeloma, but the war has not yet been won. We don’t yet have a drug or combination of drugs that will allow patients like me to have permanent and uninterrupted sequential remission. We need more drugs and classes of drugs, and we need well designed and executed clinical trials. Without good clinical trials, cancer treatment remains the same; it never changes! You should consider finding the right clinical trial that compliments your quality of life goals.
The variables in the myeloma equation of diagnosis, prognosis, treatment and survival are numerous. The equation I can solve today is outdated tomorrow due to clonal evolution, change in socio demographics status, drugs that become available and clinical trials that start or conclude. Your doctor should use data, guidelines and judgment to advocate for you based on your preferences.
Balancing the past, the present and future of a myeloma patient and maintaining current quality of life without closing the door on possible future treatments, remains an art. The artists are YOU and YOUR medical team!