One of the very first experts in the myeloma field that I heard speak was Dr. Irene Ghobrial. I was so impressed by her clear communication and obvious passion for the work that she was doing. She cares for her patients, and she wants to make a personal difference in each of their lives. Her focus is clear- she wants to help precursor myeloma patients and prevent progression to active myeloma.
Who are precursor myeloma patients? If you have been diagnosed with MGUS (Monoclonal Gammopathy of Undetermined Significance) or Smoldering Multiple Myeloma, you are considered a precursor myeloma patient.
Being diagnosed with MGUS means that there is an elevated monoclonal protein (m-spike) present in the blood, but there is no myeloma (and might not ever be!). MGUS is found in 3% of the population over the age of 70, and this number grows as people get older. MGUS is also more commonly found in African Americans than Caucasians. According to Dr. Robert A. Kyle, who identified this condition in the 1960s and named it, MGUS always proceeds active myeloma. It's not always recognized before active myeloma is recognized and diagnosed. MGUS currently requires no treatment, and there is a 1% chance per year of developing active myeloma.
So what is Smoldering Myeloma? It's the stage just before active disease, between MGUS and active myeloma. It is characterized as having 10% of plasma cells in the bone marrow, but not having any symptoms (no fractures, kidney disease, etc.) However, especially for high-risk smoldering myeloma patients, there is a chance that you can develop active myeloma. Your treating physicians should be watching you carefully to determine when treatment is needed. In general, there is a 10% chance per year that you will develop active myeloma. High-risk smoldering myeloma patients have a 50% likelihood of active myeloma progression within two years.
There are three risk levels of smoldering multiple myeloma (SMM) that depend on a few key factors:
So what can you do? If you are a low or medium SMM patient, the unfortunate response from some hematologists or oncologists could be "watch and wait". If you have high-risk smoldering myeloma, you should talk to your doctor about treatment within a clinical trial.
Dr. Irene Ghobrial has said that with solid cancers (such as colon or breast), there are pre-screening procedures that help us try to catch early cancer and eliminate it before it starts. So why wouldn't we do the same with someone who has been diagnosed with a precursor condition such as smoldering myeloma? In the past with harmful and invasive therapies, it would have made sense to recommend the "watch and wait" prescription, but these days with us understanding a deeper level of knowledge regarding myeloma and therapies, it doesn't make sense anymore to simply watch and wait. Dr. Ghobrial's mission is to develop the right trials with low toxicity interventions that prevent the development of myeloma. She is doing an amazing job proving that "watch and wait" isn't adequate anymore for "treating" high-risk precursor myeloma patients.
Take your first step and join us as we hear from one of the most experienced voices in the precursor multiple myeloma world on May 18th, 2021 at 5 PM Eastern. Dr. Irene Ghobrial will discuss two very important studies she is involved in, specifically for precursor myeloma patients (and their families!)
Your myeloma journey doesn't have to be defined for you. Register today!
Remember, even if you can't make it at the designated event time, if you register for the event you will receive a recording. Don't miss it!
For more information about precursor myeloma conditions, go to HealthTree University (Section 1: Myeloma Basics).
about the author
Audrey joined the Myeloma Crowd as the Community Program Director in 2020. While not knowing much about myeloma at the start, she has since worked hard to educate herself, empathize and learn from others' experiences. She loves this job. Audrey is passionate about serving others, loves learning, and enjoys a nice mug of hot chocolate no matter the weather.