Treatment decisions are critically important to the survival and quality of life of the myeloma patient. To make an informed decision, the patient needs to have the facts. Some patients want to discuss all aspects of their situation, treatment and prognosis. Others just want to know what to do next. Most doctors are sensitive to this and will vary their approach based on what they perceive to be the patient's wishes.
We encourage patients to be explicit about how deeply they want to get into the details of the treatment decision. And, no matter how comfortable the patient feels with a doctor, it is generally good practice to get more than one opinion before proceeding.
- Get a complete description of the treatment program:
- What exactly is the treatment?
- What are the objectives of the treatment?
- Over what period will the treatment be given?
- What is involved? How often must the patient visit a medical facility? Is hospitalization required or a probability? What is the likely impact on the patient's ability to function (i.e., work and play)? How do people feel before, during and after treatment? How do they look? What are typical recovery time frames?
- What follow-up or maintenance programs are required?
- What will the treatment program cost? Will it be covered by health insurance?
- How well has this treatment worked for others in similar situations? Effectiveness is measured in many different ways:
- How much experience is there with the treatment? How many patients have received it? How long have those patients been followed after the treatment?
- What are the odds of achieving a complete or partial remission? Which factors suggest better or worse odds?
- How long have the patients' remissions lasted? What are the factors which suggest better or worse odds?
- What would the options be in the event of a relapse? (These may change in the interim.)
- What are reasonable expectations for relieving symptoms such as bone pain, pathological fractures, anemia fatigue, hypercalcemia? What are the factors which suggest better or worse odds?
- How long have people who have received the treatment survived? For newer treatments, how many of the original group of patients are still alive?
- Like most cancer treatments, myeloma treatments generally use strong drugs and other measures aimed at destroying malignant cells and/or re-balancing body chemistry. Typically, there are side effects. Some manifest themselves during treatment. Others may show up well after the treatment is completed.
- What side effects have been observed in patients receiving the treatment? When do they typically occur? In what percentage of patients do they occur? How serious are the side effects? Are they life-threatening? Are they painful? Are they permanent? How long do they last?
- Are there treatments for the side effects? Do the treatments for the side effects have side effects?
- There are always alternatives. You need to ask all of these questions for each of the alternatives:
- What are the alternatives to the recommended treatment?
- What are the relative pros and cons of the alternatives?
- What are the pros and cons of the alternative treatments vs. no treatment?
Because the disease is rare, there are a limited number of practitioners and centers specializing in myeloma. It is very common for a myeloma patient to seek a second opinion from a specialist at a research center while continuing to rely on a local referring physician to administer and monitor treatment.
Making good decisions about treatment requires resourcefulness, careful questioning, serious thought, and courage. But, most of all, it requires that the patient and his/her support group take charge of the process.
Because there is no known cure, because there are no guarantees, because every individual is different, the ultimate decision depends on the preferences and priorities of the patient.