If you've just been diagnosed with multiple myeloma, your head is probably swimming. For most of us, myeloma is a disease we haven't heard of before. It doesn't seem fair, but early in your diagnosis you will be asked to make important decisions about your care. After you get the official diagnosis, you need to come to your appointment prepared with important questions. We suggest writing the following questions down and bringing them to your visit:
Over 80% of myeloma patients are seen in the community oncology setting. While we love local oncologists, we highly recommend having a myeloma specialist perform your initial testing and determine your first treatment. Myeloma is a rare blood cancer and needs expert level care. If your doctor is treating less than 50 myeloma patients per year, find a myeloma specialist here or get a telemedicine visit with one to confirm your diagnosis. Data shows that with the help of a myeloma specialist, you will live 2-5 years longer.
Results of any single test are not enough to make a diagnosis of multiple myeloma. Diagnosis is based on a combination of tests for myeloma patients including:
You can find a full list of necessary tests here. All myeloma is NOT the same and once you start treatment, you may lose important information about the type of myeloma you have, so getting the right tests run from the very beginning is absolutely critical. We highly recommend getting these tests run by a myeloma specialist because a local oncologist may or may not run all of the correct tests.
You may be diagnosed with a precursor condition like MGUS or smoldering myeloma, or your diagnosis may be active multiple myeloma or a form of myeloma called plasma cell leukemia (which is poorly named). While “staging” in myeloma is not as helpful as other solid tumor cancers, there are International Myeloma Staging System guidelines that can identify “stage.”
In myeloma, one antibody that normally fights infection has grown out of control. The subtype is related to the heavy and light chains of your immunoglobulins, or infection fighting cells (e.g. IgA lambda, IgG kappa, etc.). Learn more about kappa and lambda light chains here.
A certain percentage of myeloma patients have genetic mutations at diagnosis. These genetic mutations can additonally be acquired over the course of time and myeloma treatment. This includes fewer chromosomes than normal (gene deletions), more chromosomes than normal (gene additions) or a situation where the normal chromosomes have swapped places (translocations). These genetic features can come, go and change during treatment. The most common test to identify genetic features is called the FISH test. Make sure that this test is run on your first bone marrow biopsy because you don’t want to do that biopsy twice! If you wait to do this genetic testing until after treatment and you have no myeloma cells remaining to test, you will never know the characteristics of your specific type of myeloma. As my doctor says “To fight the war, you must know your enemy.”
This is determined in part with the genetic tests performed on the bone marrow biopsy. High risk genetic features include having del17p, 1qgain, 4;14 translocation or a 14;16 translocation. If you have two of these genetic features, it is called "double hit" myeloma and is considered higher risk. Other high risk factors include having high LDH, high Beta-2 microglobulin or low albumin at diagnosis. Regardless of genetics, patients who relapse quickly through several lines of therapy are inherently considered high risk.
Your first myeloma remission will be your longest and deepest, so getting the right treatment at the very beginning is crucial. We highly recommend that you consult with a myeloma specialist prior to selecting your first therapy – it’s worth the extra telemedicine visit or travel. There are over 17 approved therapies for the treatment of multiple myeloma and many of these are combined into triplet combinations or even four-drug combinations. Myeloma care can be very nuanced. In addition to getting the help of a myeloma specialist, we built HealthTree Cure Hub to help you find treatment options you could consider at every stage of treatment.
There will me more questions you should ask over time, but these key questions are the most important for your first visit. We suggest you take a proactive approach and start learning with HealthTree University, the world's largest online curriculum for multiple myeloma. You'll be glad you did.
We also suggest you create a HealthTree profile so you can begin to gather together everything you need to follow about your myeloma diagnosis. This includes your labs, genetics, treatments and side effects. We are here to support you over the course of your myeloma and our support team is always available.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of Myeloma Crowd by HealthTree and the HealthTree Foundation.